The Disease

How the Disease Progressed

By September, I had begun to experience difficulty breathing.  Not really difficulty in the lungs, but I seemed to have trouble getting enough air in.  My co-workers even noticed they could hear me gasping for air.

On September 30, 2017, I went to Knoxville, TN to a Tennessee Georgia college football game with my two older sons Austin and Brett.  Trying to navigate up and down the hills walking from the car was practically impossible.  I could not fill my lungs with air. On flat stretches, I was ok, but climbing a hill, I would have to stop and sit while gasping for breath.  My sons spent a lot of time waiting on me.  They were concerned, of course.  This was unusual for me.  Even as a smoker, I was always in decent physical condition. When I arrived home that night, I coughed up a small amount of blood.   My first thought, even then, was that I had irritated a blood vessel with my labored breathing or maybe I had an upper respiratory infection. However, I decided to have my doctor check it out.

I scheduled an urgent doctor’s visit the following week with Dr Bachstein.  He could tell something was amiss, so he scheduled a CT scan on October 6th in order to determine the cause of the blood and the labored breathing.  

On October 9, 2017,  my Monday morning commute to work was interrupted by a phone call from the office of Dr. Bachstein  The lady on the other end of the call said the doctor wanted to see me in his office as soon as possible in order to discuss the results of my CT scan. I knew that doctors do not usually call at 7:30 am in order to ask you to come to their office as soon as possible if the news is good.

I immediately called out of work, and I turned the car around, headed towards my doctor’s office.  

When I arrived at the doctor’s office, I did not need to wait long.   I was taken back to an exam room even in front of patients who were waiting when I arrived.  In quick order, the doctor entered with his laptop.  He legitimately appeared concerned. What he was about to tell me would completely change the course of my life.  The CT scan had uncovered an 11 cm mass in my mediastinum.   The mass was encroaching on my trachea, and the pressure of the mass was forcing my trachea partially closed.  This explained why I was experiencing difficulty breathing.  In addition, the mass was quickly encroaching on my heart and pulmonary artery. Only centimeters separated my heart and the mass.  Dr Bachstein referred me to a pulmonologist, Dr Kehindre, on a priority basis.  I was scheduled into his office on October 10. He suspected cancer as a possibility, but he also mentioned fungal infection as a possibility.

On October 12, I was scheduled for a CT guided biopsy at the hospital in Lebanon TN.

The tumor actually sat outside the lung in the mediastinum.  It was wedged between the lung, the trachea, and my heart.  The only safe route to obtain a sample of this tumor was to insert a long needle through my back, then through my lung, and into the tumor.  The CT was used to track the needle as it went in.  I was told the results would take a couple of days.  The test was on Thursday, so I had resigned myself to hearing back on Monday.  We could only pray.

I was waiting for a follow-up call from the pulmonologist when, on Friday,  October 13th, 2017,  I received a call from a medical oncologist’s office. My case had been referred to Dr Peyton in Lebanon TN.  They wanted me in the office first thing Monday morning.  Panic set in immediately.  Certainly,  I was expecting a follow-up from the pulmonologist where we discussed biopsy results.  However,  receiving a blind call from an oncologist could only mean one thing.  The biopsy had revealed cancer.

I frantically opened the portal from the pulmonologist’s office at my work computer.   There, I found the referral.  In the referral, the doctor stated that there had been a positive biopsy. He had asked the medical oncologist to see me immediately due to a diagnosis of small cell lung cancer.  Interestingly, I found out later that my pulmonologist had called the medical oncologist, while he was on vacation.  He asked him to see me ASAP.  My pulmonologist later explained that he did not want to delay the start of chemo by scheduling me back in.   He informed the medical oncologist this mass was rapidly approaching vital organs, in particular, my heart.  The mass was merely centimeters away from the pulmonary artery.   

Once I found the referral in the pulmonologist’s portal,  I left work, and went home.  Diana, my wife, was out of the house, so I told her she needs to come home as soon as possible.  I could not delay this news.   In the meantime, I started researching and planning.  

Most importantly,  I dropped to my knees and prayed.  I said to God, “I am placing this in your hands.  I am not asking you to heal me for my own selfish reasons. I know I deserve what is coming to me.  I was a  smoker for a very long time when I was being told that I should stop.  What I am asking is that you allow me to take care of my family.”  Those may not be the exact words, but they are the gist.

Small cell carcinoma of the lung.  

Since I knew the diagnosis now, I had the entire weekend to research it.  Small Cell lung cancer is generally not considered survivable.  The disease is considered incurable. Durable response to treatment has historically been extremely rare.  The 5 year survival rate for even stage 1 SCLC is 31%.  As we will explore later in the document, my diagnosis will become much worse than that.

What is small cell lung cancer?   What is the prognosis?  I could not wait until Monday for information on the disease. I think none of us are ever prepared for such news. 

So I started reading.   The American Cancer Society listed these survival rates for SCLC or Small Cell Lung Cancer.:

• The 5-year relative survival rate for people with stage I SCLC is about 31%.
• For stage II SCLC, the 5-year relative survival rate is about 19%.
• The 5-year relative survival rate for stage III SCLC is about 8%.
• SCLC that has spread to other parts of the body is often hard to treat. Stage IV SCLC has a relative 5-year survival rate of about 2%. Still, there are often treatment options available for people with this stage of cancer.

This was devastating news.   Naturally, thousands of questions began swirling in my mind.  What would become of my family ?    My wife moved to the USA only after we married.  She is a Brazilian national who is now a US citizen, and she has no family in the USA with the exception of mine.  What would happen to my six year old boy, Chris?   Would Diana be able to maintain our home?   So many things run through your mind.

I phoned my older sons,  Austin and Brett.  Both were devastated.  Austin was on the road at the time.  He ducked off the road into a convenience mart, and ran across his youth minister , Terry, whom he had not seen in years.  Terry was the associate pastor at River Rock Baptist Church.  After talking for a few moments, Terry asked Austin to come to church, and handed him his card.   By that evening, Austin had given that card to me.  Diana, myself, and Chris are still going there.   I really felt this was the first visible sign that God was looking over us.  I felt as if God told me we needed to be there.

All in one week, I progressed through three doctors, a biopsy, and into chemotherapy.  On Monday, 10/16/2017,  I saw the medical oncologist. He explained to me that small cell lung cancer is a very aggressive disease.   The prognosis is not good.  Basically, he was giving me the same statistics which I had found online, and quoted, earlier in this article.  This particular cancer has historically been impossible to cure.  Chemotherapy is often successful in the front line, but still, the cancer most often returns. He told us with treatment I was probably looking at a year to live.  Without treatment 3-6 months. As he was giving us this information,  I could see my wife slowly being crushed by emotions. She started  crying in the office. My sons appeared to be taking it hard as well.  I had to take some action in order to keep her hopes where they needed to be.   I had already found the statistics.  By the time I heard this from the doctor, I was past the shock.  This matter had already been placed in the hands of God.  I looked the doctor in the eye and told him I had faith to overcome this.  My case will be different.  He responded, “That certainly helps.”    

In retrospect, I believe it was this faith in God which pulled us through these difficult times.  We fought to keep our lives as normal as possible. I continued working except when I needed to go for treatments.  Not because I always felt like working, but because I was determined I would maintain our lives as closely as normal as possible.

I was started on the first line of chemotherapy commonly prescribed for small cell lung cancer.  The combination was Etoposide 6 and Carboplatin.  Additional CT scans, along with a PET scan were ordered.   On October 20th, 2017, CT scans of the chest and head were conducted at the hospital.  A PET scan was also conducted that day.

October 23rd, I went back to the oncologist for the results.  The cranial scan revealed four subcentimeter brain lesions.  Two were in the frontal lobe and two in the occipital lobe which is in the back of the brain.  Small Cell Lung Cancer is prone to spread, and it is known to spread to the brain amongst other organs. 

The prognosis went from bad to worse.  This metastatic diagnosis made my cancer automatically stage 4.  According to the American Cancer Society,  the five year survival rate of stage 4 SCLC is 2%.