Lung Cancer: Our battle. Our loss. Our Story.

“Five.”
“Maybe six weeks. Max.”

–The Pulmonologist. 

 

Remembering Mom

I wish I could share an inspirational story about how my mother survived lung cancer. When I read Frank McKenna’s survival story published by the Lung Cancer Foundation of America, it was a bitter pill to swallow that the same miracle couldn’t have happened for my mom. She was my mother after all. Many remember her high spirit and infectious laugh, always accentuated by her signature red lipstick. She taught me sass, class, to carry myself with dignity, and to embrace life. 

Like my mother, Frank McKenna was diagnosed with stage four lung cancer. At stage four, the cancer metastasizes, spreading to other parts of the body. I can still feel the flush on my face the night Pops called to tell me that my mom had cancer. It’s been two years now, but I can still remember feeling the hot tears rolling down my cheeks, as my world shattered with the news. 

The ‘silent’ symptoms of lung cancer

At the time, I was living in The Netherlands for more than a handful of years. Communicating with my mom was sporadic. It was a lot like driving with nothing but a single channel on the radio. You would  jam out to whatever was playing for a while until eventually you would lose signal, followed by a long radio silence. Similarly, my mom and I would catch up for hours at a time, talking well into the night, messaging continually for days after. Until eventually the messages became fewer, followed by a prolonged radio silence, until we were back on each other’s frequency again.

I had been aware that things were off with my mother’s health. During that last year, she had gotten carpal tunnel. A misdiagnosis. When they opened each wrist there were no entangled ligaments pressuring her meridian nerve. The cost of the procedure was reimbursed, but the tingling and numbing sensation in her hands continued. Eventually this numbing, and tingling sensation traveled to her shoulders. She was then sent to a rheumatologist, and told she was arthritic. A second misdiagnosis. Finally, the sensation traveled to both her knees. She was then treated for rheumatoid arthritis and given a shot of cortisone in each knee. Her third and final misdiagnosis. 

Shortly after her second cortisone shot, she got the flu. After listening to her breathing, her doctor wanted to take a quick chest x-ray. The image revealed discolorations in her lungs, perhaps fluid. At this point, I am sure my mother, as sharp as she was, probably didn’t think she just had a curious case of TB or pneumonia. Nevertheless, she hoped for the best. The doctor admitted her to the hospital to do a biopsy, the result of which bruised her vocal chords. She couldn’t speak for weeks. Hurricane Irma had just ripped through southwest Florida, so the hospital took an extra week to get her biopsy results back. 

Her diagnosis

It can never be a good sign when the doctor has to ask you to come in. After the doctor delivered the news that my mom had stage four non-small cell lung cancer, my pops braved the follow-up question, “How long do we have, realistically?” The doctor took a dramatic pause– knowing that my father is the no-nonsense type, and with a heavy heart looking directly at him he replied, “Five. Maybe six weeks, max.” It devastated my father, more than he will ever let on. My parents were barely 60 years old. What about retirement? They had been happily married for over 35 years–more than half their lives. 

I was home from Amsterdam within five days, having arranged what I needed for my apartment, and my extended leave from work. When I arrived home, I was shocked to see my mother. She was frail, a shadow of her former self, with a pipsqueak of a voice. I was angry, firstly, at myself, for not being there sooner. My parents clearly needed help. The prolonged gaps between speaking left me uninformed of Mom’s true condition. Secondly, I was mad at her, because she, like all mother’s, insisted I not take time off, to wait on booking my flight. Therefore, upon seeing her, I knew that if I would have delayed any longer, there would have been nothing left of her.

 

Learning about lung cancer

I truly admire how Mom was always determined to live her life to the fullest, up until the very end. She chose life, a life that was full, and by God she was going to go out that way, too. She had demanded ‘quality over quantity.’ In other words, she signed a DNR and exclaimed, “No chemo!” When we got the MRI results back, the cancer was not only in her lungs but in her lymph nodes, brain, spine and joints, which explained the tingling sensation in her hands, shoulders and knees. I looked at the results myself, having experience with neuroimaging, and I was astonished. With tears in my eyes, I looked at Mom and told her, “You are a walking miracle.” 

To this day, it is still difficult to comprehend how the cancer was so extensive without us ever having known. I asked the doctors, how had we not been able to detect it? Why was my mother misdiagnosed three times? Was there a racial disparity for women of color or were these doctors just incompetent? I wanted an explanation. However, when it comes to lung cancer, by the time you notice a persistent cough or have trouble breathing, more often than not it’s already too late. Lung cancer has ‘silent symptoms’, often going undetected in the early stages until it spreads affecting other parts of the body, which result in misleading symptoms and misdiagnoses. In the case of my mother, the inflammation in her joints looked a lot like rheumatoid arthritis. 

Now, in the spirit of full-disclosure, my mother was a smoker. Not a pack day kind of smoker, but more of a casual two packs a month kind of smoker. You know how some adults will say, “In the old days, everyone smoked.” Nowadays, there’s no excuse, just quit. We know there’s a correlation between smoking and lung cancer. The relationship between smoking and small cell lung cancer is causal. On the other hand, non-small cell cancer is common amongst both smokers and non-smokers. Frank McKenna, the survivor and personal trainer, had never smoked in his life, but was genetically predisposed to cancer, thus contracting non-small cell lung cancer. 

“Quality over quantity”

As I took on the role of being my mother’s caregiver, I succeeded in getting her to gain some of her old weight back. Her voice finally regained it’s bass tone again. She was starting to look like her old self, just after 10 days. I was scared but also becoming a bit hopeful. I remember Mom never being sick, never grappling with the flu or even the common cold, so I caught myself thinking just maybe she could fight this. 

If you have ever been advised to seek a second, third, or even a fourth opinion, I strongly recommend going through the headache of doing this. Shopping around for treatments and doctors was confusing, slightly threatening, a little frightening, and at times painfully irritating. We walked out on the first doctor who tried to recommend chemo. However, when the second doctor suggested radiation for her brain, I listened. I listened, because he told me she could suffer from a seizure. Having studied the brain, I should have known better as none of the cancer was located near prone areas. However, I was afraid of her pain and even more so of being absolutely helpless. She would wake with sharp pains, and radiation was the surest way to mitigate that. Nevertheless, the doctor failed to mention that radiation didn’t take effect until six to eight weeks post-treatment. Information Pops and I learned well after the fact. 

Naturally, her kinky hair fell out, yet her spirits were high. She was beautiful bald, projecting a strangely calm smile still accentuated by her signature red lipstick. Typical of Mom. I became strangely calm myself. We avoided painkillers and resorted to natural alternatives, which both boosted her appetite and made her more at ease with the impending unknown. She could call family and loved ones and have those final meaningful conversations, without drowsiness or loopiness. The pain didn’t disappear but it was manageable. 

 

Targeted therapies 

As in Frank McKenna’s story, a biomarker test revealed that my mom was a strong match for a new kind of targeted treatment. In her case, it was immunotherapy called Keytruda. An intravenous drug, Keytruda attaches to cancerous cells to block their ability to defeat the immune system. This allows your body to fight tumors and shrink the cancer. More importantly, it was an intravenous treatment that lasted 30 minutes, once a week. A stark contrast to chemotherapy. Given her high spirits, and my budding hope, we thought what do we have to lose? After all, the biomarker test indicated that more than 95% of my mom’s cancer was a match for the treatment. 

We tried it. She did one treatment, on her 61st birthday. Such a trooper. The nurses thought she was the absolute cutest. Despite that, the truth could not escape their eyes, glaring us right in the face. A look of sympathy that they couldn’t help. Thankfully, we were in and out in no time. I would go on to celebrate my 28th birthday the next day, a Friday. We played games, watched the first season of Outlander, and just relaxed. It was the most heartfelt weekend of my life, filled with love and utter appreciation for family and friends, and the good and bad times we face together. 

Come Monday morning, she woke up feeling uncomfortable, trying to catch her breath. An oxygen tank was yet to be delivered to our home. By the time we got to the doctors, her resting heart rate was 168 bpm and climbing. They put her on oxygen. The ambulance arrived 10 minutes later. 

 

Ending her story

Mom died November 8th, 2017, from pneumonia as a result of her lung cancer and complications brought on by her treatment. Her room in the ICU overlooked the Caloosahatchee River, and, as the sun was setting in that beautiful crimson horizon, she drew her last breath. It’s a view I grew up with as a teenager. Never would I have fathomed how much it would mean to me until that painful day. At peace and unafraid, the nurse removed her breathing mask, and with one last squeeze she let go and I held her hand all the way through it. She dedicated her body to science, hoping the research could lead to better outcomes for others. We remembered her on the sandy beaches of Southwest Florida. 

 

Raising lung cancer awareness 

Nope, this is not a survival story. This is simply one story of how one family dealt with their loss to lung cancer. The truth is, lung cancer is the deadliest cancer there is. Half of patients with lung cancer die within the first year of being diagnosed, usually because symptoms go undetected until it’s too late. Nevertheless, things have come a long way as far as identifying the different types of lung cancers, going beyond the labels small and non-small, i.e., adenocarcinoma, lung squamous cell carcinoma, EGFR-mutant lung cancer, ALK-positive lung cancer, ROS1-positive lung cancer, BRAF-positive lung cancer, and a half dozen more. This has opened the way to using more targeted treatments such as immunotherapy, EGFR treatments, and so on. 

However, despite these advancements, the main problem that needs to be addressed is detection. We take an average of 23,000 breaths a day. In order to continue doing that we need better lung cancer screenings. Most of these targeted treatments have a high success rate if and when the cancer is detected early on. Of course risk of contracting lung cancer increases with smoking, second-hand smoke, radon gas exposure, asbestos exposure, breathing other carcinogens, air pollution, arsenic in drinking water, previous lung radiation, and personal family history. Adults over the age of 55 should consult their doctor for blood tests, nasal swabs or ask for a  low dose CT scan. 

On a final note, in the end over the course of one year, my mother saw more than 11 healthcare providers. Despite escorting her to all those appointments her remaining weeks, I had no access to her medical  records. I told a pharmacist friend of mine in the days and weeks that followed her passing, how I wish I could have gained access to those records. Had I known about a platform like HealthLynked, I would have joined in a heartbeat. By having her records alongside mine, I would have better knowledge of my family’s medical history all at my fingertips. Smoking is bad, but genetics also have a large role in our story. In fact, since Mom’s death, many of her aunts and uncles have similarly been battling cancer.

I will always grieve the loss of my mom, but losing her so early has influenced my life choices for the better. The experience has raised my awareness, as I hope it has yours during this dutifully named Lung Cancer Awareness Month. 

 

Contributing blog writer, Marpessa Rietbergen, is a Network Provider Administrator at HealthLynked.

 

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