Tori Tomalia is a two-time cancer survivor currently living with stage 4 non-small cell lung cancer since May of 2013. Her first cancer experience was childhood osteogenic sarcoma, for which she received chemotherapy and curative surgery, and had been cancer-free for over 20 years prior to the lung cancer diagnosis. Along with cancer, Tori juggles life as a mom of 3 small children, a wife, a theatre artist, writer and lung cancer awareness advocate.

Tori Tomalia

There's an old saying in medicine, "When you hear hoof beats, think horses, not zebras." The logic behind the adage is that the common answer is usually the correct one. This is all well and good for the horses, but us zebras can sometimes get lost in the shuffle.

 lung cancer, meaning that my cancer is driven by a mutation in the ROS1 gene. There is an explosion of research currently underway, examining the genetic causes of cancer. 

is rare, accounting for only about 1 to 2 percent of all lung cancers. In fact, it wasn’t until March of 2016 that a drug was FDA approved specifically for 

-positive lung cancer. Xalkori (crizotinib) is the drug that has been saving my life for over two years.

I went to a conference two years ago that focused on acquired resistance to targeted medicines. The afternoon sessions broke out by mutation type: 

. Us zebras were tickled pink to see eight people with 

, since none of us had ever met another one before. "We better take a picture, I don't think there have ever been this many 

Since then, I have been on a quest to track down others with this rare mutation. Along the way, I met up with several others who were equally driven to form a connection and gather us zebras into a dazzle (really — that's the term for a group of zebras). It started as an informal series of text messages where we kept tacking on more people. At some point, one of us said it might be less unwieldy if we just formed a Facebook group. And so we did. This group has become a place for us to share our treatment journeys, discuss clinical trials, exchange advice on symptom management and pool our knowledge. As the months went on, and we told our doctors about the group, we realized what a wealth of information we had amassed.

It was then that the wheels started turning. There is a ton of exciting research happening in cancer these days, but being such a small group had us concerned that we would get overlooked. We are a rare breed, so zebras have to stick together.

Someone in the group suggested approaching the Bonnie J. Addario Lung Cancer Foundation asking if they would create a study just for us. It was a long shot, but we are a group of people with advanced cancer, so what did we have to lose by asking?

When you are in a situation like this, facing an absolutely terrifying and dire diagnosis and prognosis, it is very nice when someone is willing to listen to your concerns. It is even more heartening when they offer to help you. It is a lovely surprise when they take steps to support you. But it is exceedingly rare and wonderful when they actually put muscle and money behind a plan to help you reach your goals.

That is exactly what Bonnie J. Addario and her foundation did.

Over the past few months, a subset of our 

group (which now numbers over 100 people from around the globe) have been participating in conference calls with the foundation to create connections with researchers, health care providers and other stakeholders to investigate this mutation and ultimately create a 

repository that can serve to further research and treatments for our mutation.

You can read more about this incredible, patient-driven initiative on the Lung Cancer Foundation website: 

http://www.lungcancerfoundation.org/patients/ros1/

 cancer, please follow this link the answer an online survey about your disease. This is an easy step to further the understanding of 

http://www.lungcancerfoundation.org/patients/ros1/survey/

I am beyond excited to be part of this initiative, and am empowered to be part of a group of patients who are speaking up and being heard. Having metastatic lung cancer really sucks, but I have met some of the most amazing people because of it.

And really, who can overlook a dazzle of zebras?

Tori Tomalia is many things: a mom, a wife, a theatre artist, a mediocre cook, a Buffy fan, a stinky cheese aficionado. She is also, unfortunately, a repeat visitor to CancerLand. 

     Blog: "A Lil Lytnin' Strikes Lung Cancer" 

Articles

ROS1 may be a rare mutation in the cancer world, but a group of ROS1 patients have taken it upon themselves to search for answers.

Listen for Zebras: A ROS1 Lung Cancer Story

This weekend I celebrated a day I never expected to see — my fortieth birthday! It has been almost three years since that awful day when I found out that I had lung cancer that had spread throughout my body. In those days, I was so very sick and weak that I couldn't imagine living for another six months, let alone entering my 40s.

I decided it was a milestone I needed to celebrate BIG, but I also wanted to give something back to the community that has supported me and quite literally kept me alive this far. I decided to have an improv show at the 

theatre/brewery that my husband and I co-founded

. It was an amazing night. I told the story of my cancer journey, and our incredibly talented cast of improvisers took those ideas and themes and turned them into hilarious scenes that had the audience — myself included – laughing until our sides ached.

But, as it seems to happen with every joyful occasion on my life now, part of me kept wondering if this would be the last birthday I would see. I have no delusions about the path I'm on, and I am acutely aware of how insanely lucky I have been so far. I have become intricately connected with the lung cancer community, a group of people who have kept my sane throughout this awful rollercoaster ride. Unfortunately, I have learned how quickly the tide can turn and sometimes the person you were sure would beat the odds doesn't.

It's a delicate balance, this stage 4 life.

…”scanxiety” crept around the edges of my mind. My three-month scans were due the day before my birthday, but I requested to have them pushed back a week so that I could enjoy my celebration with a (relatively) calm mind.

…a fellow stage 4 boldly embraced her future and got married. Despite the uncertainly, she took the brave step into her future and decided to live!

…my lung cancer community mourned as a fellow stage 4 took his last breath. Treatment after treatment failed him, and despite seeking out specialists and clinical trials, the cancer moved too fast.

Birthdays are a time for looking back and looking forward and taking stock of where you have been and where you hope to go. At times like these, it is hard not to think about the daunting five-year survival statistics for metastatic lung cancer. These numbers have recently doubled — sounds great, right? But they doubled from 1 percent to 2 percent. As I approach my third anniversary of living with this disease, I can't help but wonder if the clock is ticking. 

I try to find the balance, focusing on all the joys I have in my life now, and daring to let my mind wander into the future. I sure hope to blow out candles that read "41."

Blog: "A Lil Lytnin' Strikes Lung Cancer" 

Birthdays are a time of great celebration and reflection, especially when dealing with metastatic cancer.

Tori Tomalia

Listen for Zebras: A ROS1 Lung Cancer Story

A Day I Never Expected to See With Metastatic Cancer

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