A Lung Cancer Diagnosis

November 2018: I have posted about my different diagnoses throughout this blog. It's been a while since I've posted about being diagnosed with lung cancer.

It all started three years ago in August 2015.  I was in the first years of a serious relationship with my boyfriend, Jeremy.  We were passed that milestone moment when you realize your significant other is your forever person.  We were planning our future together and talking about getting married.

It was also the beginning of my career as a letter carrier.  By choice, I was on walking routes. I was walking approximately 35-40 miles a week.  I would walk anywhere from 6 to 12+ miles a day. Carrying mail was more than a job. It was my career and my passion.

I would run at least one 5k (3.1 miles) a week after work with my runner's club.  I was enjoying running for the first time in my life. There were times I'd run two or three 5k's in a week.  Running wasn't just the annual 5k for charity any more.

As active and healthy as I was, I had a persistent cough and some random breathing issues.  There were a few times between late 2014 and July 2015 that I felt a heaviness in my chest, something similar to bronchitis. Each time there seemed to be an acceptable explanation (post nasal drip, virus) to justify the breathing problems.   It didn't seem too serious at the time.

When breathing issues interfered with exercising and running, I decided to get things checked out. I went to  a doctor for my breathing problems.  I had a chest x-ray. The result...a mass in my right lung.  Further testing revealed a devastating diagnosis.

We heard the words, “inoperable”, “incurable”, “terminal”.  What seemed to be minor turned out to be inoperable, incurable, stage iv lung cancer.  It was late stage, stage 4, non small cell lung cancer. At the time of diagnosis, lung cancer had already spread throughout both lungs and to my spine.  

I asked:

• How long to I have to live?
• How did I get lung cancer?
• What do I do now?

Statistics said I had a 3 to 5% chance of living one year.  Lung cancer in young healthy adults, especially women, was on the rise.  My lung cancer is caused by the EGFR gene mutation. It’s not genetic or something I inherited from my parents. It’s genomic, something in my DNA has changed and mutated.

The mutation meant I would have targeted therapy treatment instead of iv chemo.

Days before we heard, “incurable” and “terminal”.  Now we heard something promising. I had a chance at living a normal life.  It’s almost like, “normal life” echoed as it came out of my nurse navigator’s mouth.

Over the years my treatments have been targeted therapies and radiation treatments to my lung and spine.  I take a chemo pill once a day that targets the mutation that is driving my cancer.

I was able to stay at work and continued living my active otherwise healthy life. Things were as normal as they could be with quarterly PET scans thrown in to monitor disease progression. Or in my case, we watched tumors and nodules shrink and disappear. the targeted therapy did it's job. I was No Evidence of Disease within 8 months.

Our moment of relief lasted 6 months. Then the nodules and tumors returned in my lungs. We monitored that growth for 10 months. In the mean time I had a bronchoscopy biopsy to test for a new mutation. I switched targeted therapies because I tested positive for the t790m mutation.

Life is back to normal, for now. Well, as normal as it can be with quarterly scans and blood labs thrown in to monitor for disease progression.

x

One Year Ago Today...August 4, 2015

One year ago today I had the biggest medical procedure I had ever had, up to that point. August 4, 2015 was my bronchoscopy. This is a scope biopsy to get tissue from my largest lung tumor for testing.

I remember some things about that day. To say I was scared is an understatement. I had avoided all things medical my whole life. I do remember the nurse who was in charge of getting me prepped for the procedure. She made things a little easier after I told her why I was so scared.

It's funny how the mind works. Of all the things I should remember from that day, I remember the shoes I had on. They were my new Keds. I bought them that summer and only really worn them with my retro outfit I sewed for the Brian Setzer concert several weeks before. I called them my "cute shoes".

Brian Setzer concert, Hudson Gardens Event Center, June 14, 2015

While I was laying in the bed, scared, I would look down at my shoes and remember how much fun Jeremy and I had at the concert. And I thought about how I felt that day in my retro dress with my cute shoes.

I remember being in the biopsy room. The Drs. and I looked at my CT scan together. We discussed why I was having the procedure. I was given a sedative and someone either said I would smell or I would taste something bad. The next thing I know, I was back in the first room with the nurse and my mom.

I know someone from pathology looked at the biopsy that day, immediately after the procedure. Someone told my mom that it looked like cancer. They would send it off for testing and it would be several days before we would receive a confirmation.

I know my mom told me this news at some point that day. I don't know if it was the sedatives and my selective memory. I can't remember that exact conversation or the location of the conversation. Was I still in recovery? Were we in the car on the way home? Or was I at home?

I do know that I stayed off the Google searches. I didn't want to waste time searching for ailments and diseases I may or may not have. I waited to Google until the biopsy results came back and were official.

One Year Ago Today...July 24, 2015

One year ago today the Uncle Samta windsock was hung with care and the first toy donation was under the tree. I had last minute preparations to complete for our Christmas in July party that was scheduled for the next day.

One other thing I had to do that day was get a CT scan. This was the next step after something cloudy showed up on an xray two weeks before. I was to get the scan and have a follow up office appointment, a week or two later, with my primary care physician, Dr. Bird. I never expected a follow up phone call within hours of my scan appointment.

It was Dr. Bird. I can't remember the words he said. Whatever it was it sounded serious enough for me to grab the nearest pen and piece of paper and started writing words and notes from our conversation.

For other breathing issues I had a CT scan in 2008. So we had a baseline to compare to. When referring to my upper right lobe he used the words, mass and slow growing neoplasm. There were spots and nodules throughout both of my lungs. The nodules looked like an infection in the scan. I had been tested for TB. But it was days before we had the final results. There was a possibility I had tuberculosis. But I hadn't been out of the country or around anyone with TB. I discussed the party with Dr. Bird. I didn't want to spread an infection to my family and friends. And I didn't want to cancel the day before. He suggested I cancel the party. But if I decided to still have the party, I needed to keep my distance, wear a mask and not cough near anyone in case this was an infection. He referred me to a pulmonologist for the next test, a bronchoscopy, scope biopsy, to determine if the neoplasm was benign or malignant.

I had never heard the word, neoplasm. So I went to the internet to look up the definition. 

It was the the first time the word cancer had come up. I decided to stay away from the internet research until we knew exactly what we were dealing with. I didn't want to waste time and energy researching anything that didn't pertain to me and my condition.

I decided the show must go on. I didn't cancel the party. I didn't wear a mask. I had been around so many people at home and work. There was no way I had a contagious infection. Someone would have caught it by that point. We had fun, drinks and laughs that night. And we collected a bunch of toys for the Bob Telmosse Christmas Giveaway.

It was a good time and a much needed distraction that weekend.