It's Not Always The Cancer That Brings You Down

I am heading into the second quarter of my 7th year post stage 4 non-small cell lung cancer diagnosis. For more than 6 of those years, allowing for an occasional short-term slide, I've maintained a pretty positive attitude about the whole journey. Unfortunately, the past six months or more have been particularly tough for me. In many ways, tougher than the medical/physical challenges I faced during the 13 months of my clinical trial experience with all of its attendant gastrointestinal struggles.

Feeling like I'm trapped in quicksand

Often over my lung cancer years, I have advised people to allow themselves to descend into the valleys when they must, but not to stay there for too long. I tell them it's always important to look ahead and expect the sun to rise again. And it generally does. But, in recent months, I've found myself mired in quicksand. And I don't even know if it is lung cancer caused quicksand, though I suspect a connection is there.

That persistent cough of mine

You see, I've had a chronic cough that is now about 2 1/2 years old. It seemed to start when I began my Nivolumab (Opdivo) treatments. I developed a dry cough that was a nuisance, but not unbearable by any stretch. I mostly ignored it for several months. Then, I had IMRT radiation treatments. The cough continued. Some months later, it intensified and became less dry. My oncologist prescribed standard OTC and prescription cough remedies, most of which had little or no positive effect. He then sent me to a pulmonologist.

The pulmonologist quickly determined that the chronic cough was due to a common post nasal drip and he prescribed nasal mists and standard treatments for this sinus caused condition. None of these remedies worked at all. He then tried allergy and asthma medications, which were similarly unsuccessful. The cough continued unabated...and I sucked it up and simply lived with it.

Finally, after many more months had passed, I began to feel very weary of it all. It was dragging me down physically and emotionally. Coughing, a lot, on a daily basis, has its own side effects. It brings on fatigue, chest/rib soreness, urinary "issues", throat irritability, and other things like literal choking, gagging and sometimes even vomiting. I complained to my oncologist again and he suggested trying a different pulmonologist, which I did.

Switching pulmonologists

My new pulmonologist seemed very thorough in his consultations with me. He tried some of the same meds the previous pulmonologist had tried...with the same no-effect result. But, he followed that up by sending me to an ENT to have my sinuses, larynx, and upper esophagus scoped out. No abnormalities were seen, thus somewhat ruling out what I learned from him is the #1 cause of long-term chronic cough. That is acid reflux. Still, we tried appropriate reflux drugs just in case. No luck.

We then discussed the possibility of doing a bronchoscopy to see if there might be a lingering low-grade infection in my lungs causing this whole ordeal. I decided to go forward with the procedure after my coughing condition seemed to worsen considerably early in 2019, even though we still had no clue what is behind it or what to do about it. The bronchoscopy found no infection, but it did find some partially blocked airways. So, I was referred to an interventional pulmonologist for a rigid form bronchoscopy that I had done two weeks after the first one.

Finally getting a little relief

My airways are now clear, but I still find myself coughing/choking/gagging and sometimes vomiting. It seems that these episodes, what I tend to call spasms, may be happening a little less frequently, even if they remain very bothersome. This may be wishful thinking on my part, but I'm clinging to the hope that it may be the very early stages of improvement going forward.

This is a long explanation of the primary reason I have struggled to pull myself up by my bootstraps over the past six months or so. It feels so frustrating to not be able to find the wherewithal to "rise above" what seems like it shouldn't be such a big deal. In reality, 2 1/2 years of coughing and all that has come with it is wearisome and I simply want to get back to doing some of the things I've had to put on hold like attending concerts, theater, movies, even church, and traveling in comfort once more.

One thing I can say for sure, however. I am still searching for answers, but I am one determined soul. I don't give up easily. We'll get this figured out yet, and the sun will most definitely shine again.

Editor's Note: We are extremely saddened to say that on June 8, 2019, Karen Loss passed away. Karen was a valued member of the lung cancer community and an incredible advocate and avid writer. She will be deeply missed.