There is comfort in having a simple cause and effect. The unknown can be difficult to accept.
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.
This can't be happening.
What did I do to deserve this?
Am I being Punked?
Is this my fault?
This isn't real.
Cancer. The Big C. The malady that once was only spoken about in whispers. The Voldemort of diseases. With so much fear surrounding this diagnosis, is it any wonder we end up asking, "Why me?
Why does a 14 year old vegetarian get bone cancer
Why does a 37 year old non-smoking mom of three little ones get lung cancer
Why would both patients be the same person?
When I was diagnosed with lung cancer, the first person we contacted (after my parents) was my pediatric oncologist. Could this be a very delayed recurrence of my osteosarcoma? Was this caused by treatment for my first cancer? Is there something about ME that explains how I got two cancers before the age of 40?
A biopsy answered the first question. No, this was adenocarcinoma of the lung. A totally different cancer than my childhood osteosarcoma.
My pediatric oncologist confirmed that this does not appear to be a late effect of prior treatment. Survivors of childhood cancers do face a slightly increased risk of subsequent cancers
, based on what treatments were used for their first. However, the chemotherapy agents I had increased my odds of getting leukemia (very slightly). Lung cancer is nowhere on the list.
The third question was a bit trickier. She told me that I needed to get tested for Li-Fraumeni Syndrome, a rare genetic condition that makes a person highly prone to developing any number of cancers. The most worrying part about this is that I have three children. If I tested positive, each one of them would have a 50 percent chance of inheriting the syndrome.
How's that for maternal guilt?
Fast forward through CT scans, PET scans, a second bronchoscopy, genetic counseling, and sending DNA samples to be tested for Li-Fraumeni.
The bad news: the lung cancer had spread throughout my bones and into my liver. Metastatic. Stage IV. Incurable.
The good news: I do not have Li-Fraumeni. So, as far as they can tell, the second cancer is not part of a syndrome that my kids could inherit.
Those are some pretty heavy scales. But they tip in favor of the good.
That brings us back to the why.
The diagnosis of lung cancer carries with it a great deal of blame. There is the sometimes-spoken-usually-thought question that lung cancer patients face: did you smoke?
While it is certainly true that some lung cancers are caused by smoking, 10 to 15 percent of people diagnosed have never smoked (like me), and another 40 percent have quit and were living smoke-free. Also keep in mind that the older folks started smoking when it was the norm (seriously, even doctors promoted smoking back then). Sadly, lung cancer kills more people than any other cancer – more than breast, prostate, and colon cancers combined. Despite this, lung cancer research receives a fraction of the federal funding of other cancers. And it boils down to blame.
Why me? Why did I get cancer?
Well, it must be because you smoked. No?
Well, then it must be caused by previous treatment. No?
Well, then it must be caused by a genetic condition. No?
Well, then it must be caused by lifestyle choices. No?
Well, then it must be caused by second hand smoke. No?
Well, then it must be caused by radon. No?
Well, then it must be caused by pollution. No?
Well, then it must be because you prayed to the wrong god.
Well, then it must be some sort of cosmic joke.
Well, then it must be punishment for mistakes in a past life.
Because it must be YOUR FAULT.
I don’t think people follow this line of thinking to be cruel (most of the time), but rather to distance themselves from the illness. I didn't do X, therefore I could never get Y. I'm safe and can carry on without worry.
Every day we make choices about how we live. Did you choose the salad or the steak? Did you ride your bike or drive? Did you sleep a full eight hours? Did you meditate? Did you exercise?
Of course we should make healthy lifestyle choices. But we are all human, wonderfully beautifully flawed human beings. And sometimes even when you make all the "right" decisions, life has other plans.
What about you? Have you had a "why me" journey? I welcome you to share your story in the comments.
So, why me?
. . .
Why does it matter?
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.