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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.
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The Other Shoe

The stage 4 lung cancer life twists and turns down a bumpy road, but it is a road that I am lucky enough to still be traveling.
PUBLISHED: SEPTEMBER 29, 2015
Talk about this article with other patients, caregivers, and advocates in the Lung cancer CURE discussion group.
From the day I started chemo for my stage 4 lung cancer, I have had nothing but great results. The chemo started working immediately and my breathing improved noticeably after the very first treatment. Each scan showed shrinking (or at least stability) of my tumors and a PET scan even revealed that my targeted medicine Xalkori (crizotinib) had led to a complete metabolic response to treatment.

But everyone living with metastatic cancer knows that this is incurable. We all know that one day the treatment will stop working, one day the cancer will get smarter and find a way around the medicine.

I am on a fancy targeted therapy that has a great track record of controlling cancer in ROS1-positive folks like me. However, it is well known that Xalkori has one weakness, its Achilles' heel: It does not cross the blood-brain barrier. Any cancer cell that manages to slip into the brain can grow freely, unhindered by the medicine.

I bet you can guess where this is going.

My regularly scheduled brain MRI revealed three very small spots where the cancer has taken up residence in my brain. They are tiny and are not causing any symptoms. Thankfully we have been proactive and have been doing brain MRIs every six months to catch this early (if you are on Xalkori and not getting regular brain MRIs, push to get this done). The plan is to get stereotactic radiosurgery, a kind of pinpoint radiation that zaps the tiny metastases. It is brain surgery without the cutting and supposedly there are minimal side effects.

How do I feel about all this? I am strangely OK. I mean, it sucks really bad, but I have been so very terrified to get bad news that in some ways it wasn't quite as terrible as I imagined. After two years of amazing results, the other shoe finally dropped. What this means now is more appointments, more doctors to add to my team and another treatment notch in my belt. They say a criminal finally sleeps well the night he gets caught. Something I dreaded so much has happened, so I can't dread it anymore. Plus, there are still treatments, still reasons to have hope.

This isn't the end by any means. But it is a nasty reminder that the cancer is still there, still working against me, still threatening to take me away from everything I love.

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. Stay tuned for her continued adventures.

     Facebook: facebook.com/lungcancerblogger

     Twitter: twitter.com/lil_lytnin

     Blog: "A Lil Lytnin' Strikes Lung Cancer" lil-lytnin.blogspot.com

Talk about this article with other patients, caregivers, and advocates in the Lung cancer CURE discussion group.
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