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

A Cough Equals A Dark Cloud of Doubt

Yesterday was my 3 month PET scan. I had the usual scan anxiety. But the rational part of my brain was trying to rule my thoughts to a good outcome. I've been feeling great. Two weeks ago, I even had my best mental and physical day of the last 12 months. I had no pain. I had energy. I was feeling good. I even had thoughts of, it could be possible to have many, or most of my days, pain free and without a care.

Encourage your hopes / Not your fears

But then I crashed. I felt like I was getting sick. I never did get full on sick. I did get a cough. At first it was annoying. But this last weekend and the beginning of this week it was bad with congestion. I decided not to wait until my already scheduled appointment to report my cough. I called the Dr. on Monday.  They said it probably was just the start of an upper respiratory infection and called in an antibiotic prescription for me.  

The combo of not feeling 100%, anxiety about my scan and the sound of my horrible cough got me down. I just needed that cough and my fears to go away!!!!

How do you overcome the fear of the unknown?

The bracelet in the photo was given to me by an acquaintance that is a pancreatic cancer survivor. I don't wear it all the time. But I put it on when I feel the fears overpowering the hopes. I wore it yesterday.

The scan results reflected how I was feeling before the cough set in. No active cancer is visible on my PET scan! There will be no changes in my current treatment plan. You don't fix something that isn't broken.

My next set of follow up scans will be at the end of October, 2016. Instead of a, more detailed, PET scan, it will be a CT scan with contrast. I will also have a brain MRI. This is just a routine one year scan. There is no current reason or concern that requires an MRI.

I'm NED! Now what?

This week I received the greatest news a stage iv lung cancer survivor could ever be given.  I'm now considered NED, No Evidence of Disease.  I believed in small miracles.  I now believe in great big, fantabulous, miracles.

But what does that mean?
It means that a little coughing fit from a tickle in my throat yesterday wasn't immediately followed by that little voice in the back of my mind. "Was that a lung cancer cough? Why am I coughing? Oh no, did my tumors and nodules return?"  It's the same voice I hear after any twitch, ache, or pain in my back or legs.

But what does it really mean?
It means that all the tiny stars, nodules and tumors that were in my lungs and spine are not visible in my latest PET scan.  They are gone.  If you can't see them, there's no evidence of disease.

Am I cancer free?
Unfortunately, NO.  I'm No Evidence of Disease. Currently there is NO CURE FOR LUNG CANCER.   Until then, I will always have microscopic cancer cells, not visible on a scan, in my body.

If I'm NED, can I stop my treatment now?
Unfortunately, no.  It was my chemo pill that helped shrink the tumors and nodules down to nothing.  I will continue to take some type of targeted treatment for the rest of my life.  The approach now is more like treating a chronic illness similar to diabetes or high blood pressure.  The chemo pill will keep the lung cancer at bay.

I will continue taking my current treatment as long as it works.  Studies show it's effective for an average of 12-18 months. There is already an FDA approved drug that I can start to take if that time comes.  I've heard survivor stories of being on my current treatment for several years.

Scanxiety, Shock and Cebration

I had my 3 month follow up pet scan yesterday. I didn't have much scanxiety, anxiety about the results of the scan.  I had been feeling good and almost pain free for two full months. That's until this last Sunday when I started having horrible back pain.  I was so worried the pet scan was going to show progression in my spinal tumor since I was having 10-11 levels of pain on a scale from 1-10.

Lisa before her appointment
April 27, 2016

Well, I found out I'm NED!!!!!!  No evidence of disease!!!!!!  All the tumors and nodules in my lungs and spine are GONE!!!! And it's either a pulled or strained muscle in my back near the location of my spinal radiation.  I've never been so excited about back pain before.

It's surreal.  I was in shock.  My cheeks hurt last night from smiling so much yesterday. It's been a day since finding out and I don't think it's totally sunk in yet.

Lisa celebrating the wonderful news

I'm so very thankful for the prayers, love and support I've received from around the world.  I seriously believe that the prayer requests and positive energy that surrounds me are the reasons I'm considered NED within 9 months of my initial diagnosis. Truly amazing!!!!!!