Parents Perspective

3 Kids, 6 Lessons, and 8 Months to Live: A Lung Cancer Story

ToriTomalia
November is Lung Cancer Awareness Month, and to help shed light on this disease and its prevalence among nonsmokers, we present this guest post from Tori Tomalia, a mom who was diagnosed with the disease last year. Despite her dire prognosis, her treatment is working. In fact, just yesterday she had a clear scan, which means she can "breathe (relatively) easy" for the next three months. Tori tells her story beautifully, and we thank her for sharing it with us.

By Tori Tomalia

"Make memories for your children."

These words from the social worker haunt me even more than when the doctor said, with a catch in his voice, that the cancer had spread to my spine, my hip, my ribs, and my liver.

I was a pretty typical busy mom, working, going to grad school, parenting our 4-year-old son and infant twin daughters, trying to make time for my husband, and attempting to take care of the house (mostly failing on that last one).

Also, I had a nasty cough. It had dragged on for months, with one chest cold leading into another all throughout the winter. And I was exhausted, but really, what mom of three little ones isn't? As spring came, I seemed to have a sudden recurrence of my childhood asthma. But half a dozen inhalers and medications were not putting a dent in my breathing problems.

Finally, in May of 2013 my doctor sent me to have a chest CT scan to see if there was something more going on. There was. A giant tumor had wrapped itself all around my left lung, partially collapsing it, thus causing the breathing problems. Further testing showed that the cancer had spread throughout my body, making the cancer stage IV, terminal, with a median survival of eight months.

Mom, are ghosts real?

No... but some people think spirits are real.

Spirits?

I missed my son's end-of-preschool presentation because I was having a CT scan of my brain to see if the cancer had spread there, too (thankfully, it hadn't). Looking around the backyard I realized there was a chair next to each piece of play equipment, because over the past few months it had become more and more difficult for me to stand and play with my kids. I could no longer carry my little girls because I could barely breathe enough to walk. When had I stopped climbing up the stairs to tuck my son in at night?

Yeah... Some people believe ... that if someone you love very much dies, that person's spirit can come back and visit. You won't be able to see or touch, but you may sense this loved one.

But is that real?

...some people think so....

Our daughters were barely 2 years old. I had the cold comfort that at least they were too young to remember ever having a mom. That would make losing me easier, right? My throat tightens whenever they sing Daniel Tiger's "Grownup Come Back." Not always, I think, no matter how desperately they want to. When I came home from the hospital after an overnight stay, my daughter looked at me with such giant eyes, held my face in her hands and repeated over and over, "Oh Mommy! Oh Mommy! Oh Mommy!" Even at only two years old, she knew something was very wrong.

 

I was walking down a road no one ever wants to tread, and learning things I never expected to understand about cancer. Here are 6 things that metastatic lung cancer has taught me; 6 lessons I learned the hard way.

1. Non smokers get lung cancer.

Prior to my diagnosis, I thought it was impossible for a nonsmoker to get lung cancer. All the well-meaning anti-smoking campaigns teach us that "smoking causes lung cancer." Smoking is certainly not good for your health, but I, like many others, took this to mean that non-smokers are immune. Sadly, this is not true, and the one demographic where lung cancer rates is on the rise is in young, female non-smokers. In fact, lung cancer is the most deadly cancer, and kills almost twice as many women as breast cancer.

2. I had almost all the warning signs of lung cancer.

Since lung cancer was nowhere on my radar, I never realized that I was a textbook example of someone with lung cancer.

Persistent cough? Check

Shortness of breath? Check

Wheezing? Check

Chronic fatigue? Huge check

Pain in the chest, shoulder, or back? Check (I thought I must have pulled a muscle, turns out it was a bone metastasis)

Recurrent lung problems such as bronchitis or pneumonia? Check

Weight loss? Check

The only one of the big symptoms I didn't have was coughing up blood.

3. Trust yourself and be your own advocate.

If something doesn't seem right with your body, speak up. Every young person I know with lung cancer was originally misdiagnosed with asthma or a chest infection. Keep pushing and asking questions if you sense something wrong, and keep talking until someone listens to you.

4. You can live with stage IV cancer.

I began chemotherapy in July, and within a few weeks my breathing was noticeably improving. I remember picking up my daughter and walking across the yard without even thinking about what I was doing, then grinning from ear to ear when I realized what a giant leap this was for me. The chemo was working! Yes, there were plenty of unpleasant side effects, but I was able to play with my kids again.

Prior to my horrible diagnosis, I had no idea that some people have been able to make stage IV cancer into more of a chronic disease, rather than an immediate death sentence. It means constant treatment, frequent doctor visits, and endless juggling of side effects, but it also means more days on this earth.

5. Research saves lives.

As the shock of my diagnosis started to wear off, I dug into the newest cancer research and started learning about personalized medicine. They are now able to analyze the tumor's DNA and determine what went wrong to cause the cancer. I pushed my doctor for more testing of my tumor, on the hopeful hunch that this could lead to a better outcome for me. I hit the jackpot and we found the mutation, and there was a targeted medicine that I could take to control my cancer. A year later, I have no active cancer left. I know that this is only temporary and that cancer has a way of evolving to evade this treatment. When that happens, I will pursue other treatments, clinical trials, anything I can find.

It is amazing to think that if I had been diagnosed a few years earlier, I would be dead now. The advances in research are saving my life. Sadly, lung cancer is terribly underfunded, primarily because of the stigma surrounding this disease. I am counting on research to keep advancing and to help me stay ahead of the cancer. If you know someone with lung cancer, please help stop the stigma. Don't ask, "Did you smoke?"

6. The most important thing in life is the people you love.

I've been given the gift of more time. More time to help my babies turn into children, maybe enough time to help them grow into young men and women. More time to spend loving my husband and learning from his amazing ability to roll with the punches and cope with anything life throws at him. I've been given the chance to enjoy another summer, another day playing in the leaf pile, another first snowfall. More time to make memories for my children. I give thanks for the moments I get to spend surrounded by the ones I love. In the end, that's all that really matters.

Tori Tomalia blogs about her lung cancer journey here

Photo courtesy of Edda Photography.