consano blog

So how did Kim end up with lung cancer? Was it her little bit of smoking in college or maybe it was exposure to radon. I don’t know. She doesn’t know. The doctors don’t know and ultimately, once Kim was diagnosed with lung cancer, the how started to matter much less.

Most people, like my wife, don’t discover they have lung cancer until they are overly symptomatic and other illnesses have been ruled out.  By the time Kim had had a cough for a month with difficulty breathing, then lost her voice, and then started coughing up blood, almost 6 weeks had passed.  A tumor the size of golf ball had collapsed the upper lobe of her left lung.

At 34 years old, without obvious risks factors, other causes got ruled out first: allergies, asthma, bronchitis, pneumonia, tuberculosis all came back negative until she started coughing up blood. Coughing up blood is bad. We were scared. Coughing up blood is what happens in movies just before someone dies. That was two and a half years ago.  After it was determined that Kim’s cancer was non-small cell lung cancer, adenocarcinoma, a treatment plan was determined and begun.

As kids under the age of 40, our limited experience was with younger breast cancer “survivors” who endured their treatment, were in remission or NED (no evidence of disease), and living their lives.  Kim was strong and just as young as those women, and if she could endure her prescribed 8-weeks of chest radiation with concurrent chemotherapy, then she and I would get back to living our lives.

According to the post-treatment scans, the chemo and radiation appeared to work in their targeted areas. Unfortunately, the lungs are the “main bus terminal” for the body and her lung cancer decided to metastasize and took a ride down to her right adrenal gland.  Kim has been in treatment ever since and we became really aware of lung cancer.

We are aware that lung cancer is so deadly due to the fact that there aren’t any easy tests for detection – no self-exams, no PSA screenings. What we discovered is that lung cancer doesn’t just happen to old, long-time, multiple packs per day smokers. We learned it happened to us and was going to continue to happen to us. We learned lung cancer kills almost 160,000 Americans a year. We found out lung cancer kills more people per year than breast, prostate and colon cancers combined. It kills almost twice as many women as breast cancer and three times as many men as prostate cancer.

And then we learned about genetic testing and targeted therapies. We were told Kim’s cancer had a specific mutation called an ALK rearrangement and a targeted therapy had been fast-tracked for approval by the FDA, Crizotinib, and Kim would be the first patient on it at her treatment center.

I was the internet researcher for information about adenocarcinoma in those first six months so Kim wouldn’t have to read the discouraging statistics about lung cancer. Facts like the 5-year survival rate for lung cancer is 16%. That rate hasn’t really improved in the last 40 years. I also found out only 4-5% of lung cancer patients have the ALK rearrangement that Kim has.

I looked into why a drug like Crizotinib would get fast-tracked by the FDA. I was astonished at what I learned. Most traditional chemotherapies are considered successful if 10-20% of patients respond positively to them. In clinical trial, Crizotinib, had a 65% positive response rate in patients for an average of 10 months without the heavy side-effects of traditional chemo. Kim just passed two years on Crizotinib on October 4.

Knowing a “cure” is unlikely for Kim’s cancer, her goal is to always be at least two-steps behind the medicine. And there are now second-line therapies to Crizotinib in trial. The research in this area of treatment shows great promise along with targeted immunotherapies that are also in trial.

Kim and I have an intimate awareness of lung cancer. Now we need lung cancer awareness to reach an audience larger than patients, their caregivers, their friends and their families. We need people to understand that if you breathe, you’re at risk for lung cancer. We also need to change the stigma of lung cancer being a smoker’s cancer.  Almost 18% of new lung cancer cases will be never smokers and 61% will be former smokers. So please, if you ever meet a lung cancer patient, don’t have your first question to them be, “Were you a smoker?” Instead ask them how you can help.

If you’d like to learn more about Kim’s ongoing journey, she blogs her experiences at aquariusvscancer.com.

•   It Matters to Me
•   Cancer
•   Lung Cancer
•   Caregiver

My mother was that little girl. I’m here to write this story because those soldiers didn’t roll up the door. I relate this to you not to garner sympathy, but to give you a glimpse into what made mama tick. 

“I’m going to run as fast as I can, and then I won’t be scared when they hit me.” 

Fast forward to 2010. Mom was crawling out from the depths of depression after back-to-back losses of her only sister, followed by the soul-crushing death of her husband of 53 years, my father. With tremendous effort on our family’s part, we had held mom’s head above water for two solid years. One day, she laughed. Another day, she sang. Eventually, mom began to walk among the living again. 

As life would have it, this relatively happy period would be short-lived.  On June 6, 2012, mom was diagnosed with advanced, inoperable lung cancer. She moved in with my family, and began aggressive treatment: thirty days of radiation over six weeks, coupled with five cycles of chemo every three weeks. It was a brutal regimen, but mom wanted to live. 

She experienced just about every possible treatment toxicity and side effect.  The two of us spent weeks in the hospital. We “celebrated” her birthday there. It was touch and go for a time, but mom prevailed. Her doctors were delighted with her recovery. Mom’s CT, PET and brain scans were clean: no evidence of disease. She had dodged another bullet, or so we thought.

Then it happened. Mom was sleeping too much. Her oxygen saturation was low, so she went back to the hospital. Over the course of three weeks, mom was tested, cultured, biopsied, yet no answers emerged. Eventually, she couldn’t get enough oxygen to move. Since she was clearly dying, a last-ditch VATS biopsy of her lung was performed. Post surgery, we were told her lung was black, stiff and basically shot to hell. The pathology report called it Diffuse Alveolar Damage. It was incompatible with life. Game over.

Mom was taken off the ventilator the next day. Even though we were told death would likely come in a few minutes, mom held on for almost two hours. I held her hand, listened to her breathing slow, felt her pulse weaken. Mama died, surrounded by all her children and grandchildren, on March 28, 2013, at 11:14 a.m., less than ten months after she was diagnosed. We buried her the following day, next to my father.

Despite overwhelming grief, I was able to take away two positives from this gut-wrenching experience. Mama and I often butted heads, probably because we were so alike. I often took comfort and refuge in being a daddy’s girl instead of working on my relationship with her. When I became mom’s full-time caretaker, advocate and hospital sleepover buddy, we developed a closeness that will stay with me all my days. I am most grateful for that. 

Mom’s lung cancer diagnosis also forced me to learn about a disease that, frankly, I didn’t want to think about.  I mean, who would? Well, I learned we all have to give this disease the attention it deserves because chances are very good that lung cancer will touch each and every one of our lives.  It’s estimated that one in fourteen Americans will be diagnosed with lung cancer. Most will be non-smokers at the time of diagnosis. In fact, 15-20% are defined as never-smokers. So, we can’t just sit back and think it won’t happen to us. It can, and does happen to an American every 2½ minutes. 

It gets worse. Lung cancer has a dismal 5-year survival rate of less than 16% because the disease is usually diagnosed at an advanced, metastatic stage. Sadly, my mother’s experience isn’t all that unusual. The majority of lung cancer patients don’t survive even a year post diagnosis.

These dreadful statistics are compounded by the reality that lung cancer receives the least federal research funding, by far, of the major cancers, despite the fact that it kills more people than breast, colon, prostate and pancreatic cancers combined, giving it the dubious distinction of being the number one cancer killer. In the United States, approximately 160,000 people die of lung cancer each year. Worldwide, lung cancer kills 1.5 million people yearly, with nearly a third of those deaths not smoking-related in any way. I believe that the inaccurate portrayal of lung cancer as a smokers-only disease is a big reason for these research funding and survival disparities. In the case of lung cancer, unlike most other diseases, many somehow feel qualified to sit as judge and jury. Morally, this is a very slippery slope, one that will eventually harm us all.

There is a silver lining, though. Even with inadequate attention and lack of funding, there have been great strides made in lung cancer research in the past decade, much of it focusing on genetic mutations. New, targeted therapies are allowing some lung cancer patients to live much longer, with good quality of life, than ever previously imagined. 

“I’m going to run as fast as I can, and then I won’t be scared when they hit me.” 

When my mother was diagnosed, I came to a realization. Mama didn’t run from her disease, like she wanted to run as a child from the soldiers’ bullets. She faced advanced lung cancer head on, enduring terrible, toxic treatments in order to have the chance to live.  In mom’s honor and memory, I’ve made a conscious decision not to run either. I invite you to join me. Learn more about lung cancer. Speak out about its survival and research funding disparities. Don’t participate in the “blame game” stigma surrounding the disease. Become an advocate for this largely neglected cancer. Do something. Act. 

•   Cancer
•   It Matters to Me
•   Lung Cancer
•   Caregiver