At the age of 37 I was blindsided with my lung cancer diagnosis. I had been battling what my doctors swore was bronchitis for almost two months, a debilitating cough which could not be eased with anything. After several visits to my family doctor a chest X-ray then chest CT was finally ordered which showed pneumonia in my right lung. Since the antibiotic game I had been playing would have been the same course for pneumonia they decided it might be wise to visit a pulmonologist. They quickly diagnosed me with BOOP (bronchiolitis obliterans organizing pneumonia) and sent me home with steroids.
Thankfully I continued to be my own best advocate because after two weeks of steroids with no real change I called them back and they scheduled a bronchoscopy to see what was really going on. At this point it had been about three months since the cough initially came into my radar and we were trying to determine all the possible things that could be causing an infection. We even started the process of rehoming our pet rats as that seemed to be the most logical source of possible contamination.
Monday morning I received a call asking my husband and myself to come in to go over the results from the bronchoscopy. I don't remember much from that day as I was starting to worry because a 7:30 a.m. phone call requesting my husband and myself didn't feel promising.
That evening my world crashed around me. How could I, a young and healthy person who never smoked, have lung cancer? I knew it was a death sentence, something I was not prepared to face.
The next few weeks were a blur of tests and doctor appointments resulting in a scheduled partial lobectomy. Things were looking up as the plan was to remove the affected portion of the lung, get the crap out of there and be on the road to what we thought was a fairly cancer-free future.
That all changed again just in time for my 38th birthday. They were unable to keep my oxygen levels up once they had me under for surgery so the surgeon called the procedure off. More tests and constant oxygen resulting in the news they wanted to transfer me to the University of Penn for more help. I spent my 38th birthday taking an ambulance ride from Lancaster to Philly, with three amazing EMTs, to learn I was ALK positive and start my first corse if treatment.
I'm still far from a lung cancer expert but I've learned this much in the last year. This disease can affect anyone, regardless of age, race or gender and it really doesn't care if you are or were a smoker. The research is years behind because funding is unacceptable. The stigma behind this disease leaves many of us feeling like we are fighting perception more than a disease. I am considered somewhat fortunate as the ALK mutation has a course of treatment that should give me several good years of fairly normal life, but it's far from being cured. I will never be in remission and will remain on some sort of treatment regimen until there are none left.
Living with this cloud is very challenging at times and some days are better than others. You truly learn to try to focus on what's important and those who matter most. My family and friends are what keep me going, finding the ways to feel normal, have fun and to laugh! I'm also trying to do what I can to help educate others, raise funds and potentially help others who are fighting alongside me.
As alone as you may feel, you aren't! There are people out there, some local many virtual but all willing to listen and help shoulder your tears. Positivity and laughter are important and you must find ways to incorporate that daily! I still say laughter is the best medicine and staying positive may not cure you but it will help you feel better in that moment which leads you to the next moment and onward to more.