Living with Lung Cancer

When I lost my voice in June 2019, I never expected what would unfold in the following year.  I was wheezing, coughing, and short of breath, but I did not feel sick.  After two misdiagnoses (of allergies and acid reflux), I finally had a chest X-ray and then a chest CT scan, which showed tumors on my left lung that were suspicious for malignancy.  My primary doctor delivered that shocking news on a Friday afternoon at 5:00, but she said that lung cancer today is not a death sentence.  I certainly did not believe her at the time.  My husband and I spent the weekend absorbing the shock, informing family and friends and, regrettably, consulting “Dr. Google” (I do not recommend this).

I was fortunate to have a pulmonologist who was knowledgeable about biomarker testing.  This term can be confusing because it is used interchangeably with molecular or genetic testing, but basically tissue and blood can be tested for genetic alterations that are treatable.  After the biopsy, I learned that my tumor had an EGFR mutation (Exon 19 deletion), which made my medical oncologist very “happy” because I was a candidate for targeted therapy.  The ultimate diagnosis was Stage IIIB non-small cell adenocarcinoma.  The loss of my voice was caused by a permanently paralyzed left vocal cord due to the tumor in my lung.

How did I get lung cancer?  Could it have been the toxic dust from the collapse of the World Trade Center in Lower Manhattan on September 11, 2001?  I was an office worker downtown for many years, and although I was not present on that awful day, I returned to work the following week, when Lower Manhattan reopened.  The air was filled with particulate matter, and for months the uncovered trucks filled with debris rumbled by.  The EPA’s assessment was that the air was “safe”.

I have since learned that the 9/11 event is presumed to have caused my lung cancer.  There is a list of many other 9/11-caused cancers and diseases.  I’ve applied to the 9/11 Victims Compensation Fund and have enrolled in the World Trade Center Health Program.  (I engaged a 9/11 law firm to assist me in the process, as it can be a little daunting.)  Until I became involved in the Fund and the Health Program, I did not know that annual cancer screenings are free, and once an applicant is certified into the Health Program, you are entitled to free health care for life.  It is important to note that smoking history is not taken into consideration, because your disease is presumed to have been caused by 9/11.

What I did learn was that my mind gradually recovered along with my body. 

In December 2019 and January 2020, I went through radiation and chemotherapy, both of which caused severe side effects.  The radiation gave me extremely painful esophagitis (due to the location of the lymph nodes), and eating and drinking were extremely difficult.  I was regularly dehydrated and had to get IV hydration at my chemo infusion center 3 times per week.  It was difficult to find pain management that I could tolerate.  Whether caused by chemo or steroids, on Valentine’s Day 2020, I developed severe abdominal pain, which sent me to the emergency department, where I had emergency abdominal surgery for a perforated bowel.  I had sepsis and would have died without the surgery.  It was in the ICU post-surgery that I was not sure I could survive the pain and overwhelming nausea, and I told my sister I could accept my death.  I know this frightened her, but I was just being realistic.

After I was moved to a regular hospital room, I continued to struggle:  I had orthostatic hypotension, which meant that my blood pressure would drop precipitously when the physical therapist tried to get me to stand up.  I was in the hospital for 10 days and a nice rehab facility for another 10 days, where I worked with physical and occupational therapists.  Luckily, I was discharged just around the time Covid began.  I received home health care for about a month afterwards.

My recovery has been slow, painful, and uneven—but I eventually began to get stronger.  In June 2021 I developed painful shingles and it took several weeks to recover from that.  Today I feel almost normal, my scans show that the treatments plus targeted therapy have been successful.  My oncologist is happy with my progress, and the World Trade Center Health Program has declared me “healthy” with lung cancer.  Throughout my ordeal, I’ve been so thankful to have my husband as a devoted caregiver.  I think it has been harder on him because so much was out of our control.

I am grateful that biomarker testing found a targetable mutation, which means my disease can be controlled.  I have also been fortunate to get encouragement from other survivors in the lung cancer community.  It is good to know that the science of lung cancer is changing quickly, and we have reason for hope.

My message to anyone who was present in the “exposure zone” in Lower Manhattan on or after 9/11, or even if a loved one died from such exposure, is to please explore the benefits available from the 9/11 Victims Compensation Fund and the World Trade Center Health Program.  The programs are for all of us, not just first responders.

I have been in that dark place, not knowing whether I could—or wanted to—survive.  What I did learn was that my mind gradually recovered along with my body.  I also had to train my brain not to think of the what-ifs or worry about the future.  None of us have a guarantee of life, so I live one day at a time.  I have been able to resume my prior activities (with Covid restrictions).

Lastly, I am grateful to my friends and family, who have supported me through everything and are still on my team.