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Despite the TV Ads, Even Doctors Didn’t Know Much About My Cancer
Different Journey, Different Plans
In the fall of 2006, I was 54 years old and living a storybook 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 best described as feeling like getting out of the shower and jumping directly into 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 described 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 a.m. 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? Are we bringing enough Euros? Needless to say, the question "Do I have mesothelioma?” never crossed my mind.
I was barely home when the phone rang. It was my doctor; they found fluid in my abdomen. Little did I know that day was indeed the start of a journey, but it wasn’t the one Lora and I had planned.
Three Anxious Months of Waiting
At this point, neither my doctor nor I suspected mesothelioma. Fluid was not a good symptom, but my hopes were it was nothing. It could be a simple fix — a few pills or a quick surgical procedure and it would be over within a couple of weeks. I never imagined it would take more than three months, a half a dozen doctors, and several painful biopsies to get a final diagnosis.
If you've ever waited for important news, you can 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 myself whole again turned out to be worse than getting that final diagnosis. Having no idea what was wrong, we had no idea what to do. All we could do was wait, see more doctors, get more tests, and hope for something new to happen.
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 loudly or subtly 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 sat through 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 almost immediately.
Having so much time to think is dangerous, as my excitement now had transformed into 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 seeing a doctor and getting 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!
Eight Years Later, I Still Have That TV Cancer
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. One that has lasted almost eight years.
When people refer to my disease as “that one on TV,” I laugh and nod. Yes, “that one from TV commercials.” It’s a rare form of cancer that currently has no cure and few viable treatment options. It’s a rare form of cancer that, for now, my doctors and treatments have kept on the back burner.
Rich Moscahas been an active member of the mesothelioma patient community for more than seven years and has attended the last seven International Symposia on Malignant Mesothelioma, including advocacy days on Capitol Hill. Through a nomination by the Mesothelioma Applied Research Foundation, he has participated in six Congressionally Directed Medical Research Programs’ grant panels, giving him a unique perspective on the scientific community’s focus and dedication that most patients do not experience. Prior to retiring, Rich spent 35 years working in the IT industry.
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