“If I had a gazillion dollars I would fund massive education programs for oncologists, getting them up to date on stage IV so that I don’t have to hear any more stories about people being sent home to die. I would fund all the lung cancer researchers (and other cancer researchers, because I think more will be done if they work together and focus on drivers rather than just the location of the primary). Then I would set up funds for every lung cancer patient and their families so that they could focus on getting well instead of money.”
That’s what Tori Tomalia would do if she could help the fight against lung cancer without financial restriction.
The mom of 3 small children was shocked when she was diagnosed with lung cancer in May of 2013. She was young and didn’t have any risk factors. It was the farthest thing from her mind.
Tori had been having difficulty breathing. She had been getting worse for several months and her symptoms were attributed and treated as a series of chest colds, then asthma. She was given many medications but she kept getting worse.
Finally, it was recommended that she have a CT scan, which showed a huge growth in her left lung. A biopsy determined it was malignant. Subsequent scans revealed she had many bone metastases throughout her spine, hip, rib, shoulder blade, and one in her liver. Her diagnosis was stage IV, adenocarcinoma, non-small cell lung cancer.
After the initial shock, Tori began to advocate for herself. She pushed for genetic testing and is now on a targeted drug called, Xalkori. She experiences stomach issues and fatigue from the drug.
“This is a strange place to live in. I feel relatively decent but I have terminal cancer. Having cancer has made me even bolder. I have always been pretty outspoken, but now I feel like, hey, I have terminal cancer, this is no time to pull my punches. Or, as a friend said, “Stage IV is no time to be timid.” It has also helped to put time into perspective. I am more likely to do the things I want NOW rather than waiting for the right time or whatever.”
Tori says the worst thing about this experience is thinking that her kids may lose their mom. She feels terrible for her husband and what he is going through and says she has a lot of guilt. Keeping busy helps her to quiet some of those thoughts that run through her mind.
She speaks frankly about her experience on her blog, over social media (twitter, FB, online support groups) and tries to educate people about lung cancer and dispel some of the myths. Tori participated in the #WhipLungCancer challenge and will even be speaking at a lung cancer walk next month.
When asked what advice she would give to someone newly diagnosed, Tori said:
“Have hope. And get tested for mutations. Seriously, even if your doctor said they tested, ask for which one. They wouldn’t have found mine if I hadn’t asked, and I might be already dead because of that.
There is a lot of exciting research coming down the pike.
My goal is to stick around long enough to see the results!”
