When I tell people I battled mesothelioma and lived to tell about it, they often ask: Oh, is that the disease they have commercials for on TV? Yes, my name is Rich and I have that cancer you see on TV.
For those unfamiliar, mesothelioma is a form of cancer directly related to asbestos exposure, and it’s as deadly as they come. There is no cure. Treatment options have very limited effectiveness, and long-term survival prognosis is not good. The five-year survival is less than 10%. A diagnosis like mesothelioma will stop you in your tracks.
In the fall of 2006, I was 54 years old and living a textbook life. My wife Lora and I had recently become grandparents, our youngest child was getting married the following year, and we were just about to embark on our dream vacation: a two-week Mediterranean cruise.
I had been feeling a little bloated around that time, and more often than not I would wake up in the middle of the night in a severe sweat. I felt as if I had gone directly from the shower to the bed. I self-diagnosed it as another diverticulitis attack and was going through it unencumbered, as usual.
During my annual physical, I didn’t even think to mention it to my doctor until he asked the routine question:Is there anything else you want to discuss? His eyebrow shot up when I told him my symptoms, and he immediately sent me for, what I now know would be, the first of countless CT scans.
My first scan was scheduled for the following Monday at 8 AM. That same Monday evening Lora and I were supposed to fly to Spain to start our cruise. I chugged that disgusting contrast, laid motionless in a CT scanner for an hour, and thought about what I still needed to pack. Did I remember the sunscreen? Were my walking shoes packed? Needless to say, the question “do I have mesothelioma?” never crossed my mind.
I was barely home when the phone rang. Little did I know that day was indeed the start of a journey, but not the one Lora and I had planned—they found fluid in my abdomen.
At this point neither my doctor nor I suspected mesothelioma. Fluid was not a good symptom, but my hopes were it was nothing. I was thinking simple fix, take a few pills or have a quick surgical procedure and it will be over within a couple of weeks. I never imagined I wouldn’t even get a diagnosis for another three months.
If you’ve ever waited for important news, you understand the anxiety I was experiencing during that three-month time frame. What was wrong with me? Why couldn’t they figure it out? The mental anguish of waiting and wondering was nearly as painful as those biopsies. Not knowing, feeling powerless, wanting so badly to make yourself whole again turned out to be worse than getting that final diagnosis.
Then, in true mesothelioma fashion, when I least expected it, a new symptom suddenly appeared. When you’re waiting for a diagnosis, you’ll be amazed at how in-tune you become with your body, no matter how loud or how subtle a signal occurs. So when I felt a golf ball-sized lump at the base of my neck, I knew my body just sent me a loud signal.
As I went for yet another CT scan, I was almost excited about it. Finally, this will give us the answer we’ve been looking for. This was the one clue to the crossword puzzle we needed. This was the one turn needed to get out of the labyrinth.
What they found was a blood clot in my neck and inflammation in my abdomen. I was sent to the emergency room and admitted to the hospital the same day.
Having so much time to think is dangerous. My excitement had turned to fear. Fear that I wouldn’t see my grandchildren grow up. Fear that my job of being a father would be cut short. Fear that Lora and I would not be able to fulfill the many dreams and plans we made together. I would have given anything to leave that hospital room and run with the bulls in Spain or tandem jump off a skyscraper—something just dangerous enough to take my mind off the unknown and the uncertainty of a daunting diagnosis.
More biopsies, more doctors, more questions. In just three months I had visited more hospitals than I had in my entire 54 plus years. But just when the repetitive cycle of ‘see a doctor and get a test’ started to feel like a way of life, something miraculous happened. I found a surgeon without an ego (which surgeons themselves will tell you is a rarity). Even though the biopsies were initially inconclusive, he knew what he was looking at. His words of wisdom still reverberate in my head: You need to see a mesothelioma specialist!
Seeing the mesothelioma specialist finally delivered a definitive diagnosis, and in a strange way, a sense of control I hadn’t felt over the past three months. Having that diagnosis, made me feel active, almost triumphant. It also let me know I had a new journey ahead of me—one that I never expected.
When people refer to my disease as “that one on TV” I laugh and nod. Yes, “that one from TV commercials”. That form of cancer that currently has no cure and has few viable treatment options. That form of cancer that, for now, my doctors and treatments have kept on the back burner.
BIO
Rich Mosca has been an active member of the mesothelioma patient community since 2006. He became involved with the Mesothelioma Applied Research Foundation after attending his first International Symposium on Malignant Mesothelioma. He has advocated on behalf of mesothelioma patients on Capitol Hill, and through a nomination by the Mesothelioma Applied Research Foundation, he regularly participates in the Congressionally Directed Medical Research Programs’ grant panels. Prior to retiring, Rich spent 35 years working in the IT industry.
