Anyone who had the pleasure of meeting and knowing my husband would tell you about his quick wit and uncanny sense of humor.
Walking into the waiting room to pick him up after his colonoscopy, I remember thinking to myself that it was quiet, almost too quiet. I turned the corner to see my husband sitting on a chair with a piece of paper in his hand. I asked him if he was ready and he said no, the Doctor was waiting to speak with us and that she had found a tumor or as she described it “an angry mass” in his rectum.
His response was stern and matter of fact. This was no joke.
“I have cancer.”
Those were the words that would change our lives forever on April 29, 2015. Most of what was said after that was a complete blur to be honest.
My husband was a New Britain Firefighter and Chief Petty Officer Scott Richard Johnson. A father of three young boys, a son, brother, uncle and friend to everyone. He was also notorious for discussing his daily bowel habits at the firehouse so it almost made sense that of the hundreds of different cancers out there, he would be diagnosed with Stage IV Colorectal Cancer. That’s right, our healthy, fun-loving guy was about to go through two years of surgeries, chemotherapies, and radiation. In the end on August 16, 2017, a little over two years later, Scott’s body had had enough. In an instant he was gone and the life I knew, was going to be forever changed for myself and our boys.
Four months prior to his diagnoses, Scott began having bowel trouble. He chalked it up to pain medications from a knee surgery he had in January, but the symptoms were getting worse and worse as the weeks and months went by. Occasional blood in his stool, narrow string like bowel movements, abdominal pain and constipation were the first signs. Scott would say he felt like something was constricting him, a pressure of sorts and that he never truly felt like he was empty. He had the constant urge to go, but a good nine times out of ten, nothing would happen. He had complained to his Doctor repeatedly and was told he probably had hemorrhoids and was placed on probiotics for a month.
He had asked for a colonoscopy and was told he did not meet the age requirement. A month of probiotics and things were getting worse. Upon going back to his Doctor, he finally agreed to send Scott for the colonoscopy only after insurance approved it, but by then it was too late.
No one knows your body better than YOU. Advocating for yourself is critical especially when you know that something has changed in your body. The American Cancer Society recently has reduced the age for colonoscopies from age 50 to age 45. While this is a great start, it should be lowered still.
Colorectal Cancer is the second leading cause of death among younger adults and has one of the highest curable rates if caught early. After Scott’s death I was invited by Connecticut Senator Christopher Murphy as his guest to the State of the Union. That experience gave me the platform to go out and let others hear Scott’s story and the story of so many others who are being denied this simple procedure because of age or cost.
It is incomprehensible to me that Seniors especially are not receiving colonoscopies because they are afraid they are going to have to pay out of pocket expenses. Medicare covers the full cost of colonoscopies, however, if a polyp is found and removed during the procedure, individuals who have benefits through Medicare will wake up to a cost sharing payment of $300. Seniors should have access to this lifesaving screening without a possible financial burden.
For the last few years, I have been working with the Fight Colorectal Cancer Organization to have Congress close the loophole on colonoscopies and with your help I believe we can do just that. Earlier screening would result in fewer cases of colorectal cancer, less treatment associated costs and the most important of all, fewer needless deaths from a disease that is easily detected and prevented.
For more information on Colorectal Cancer and Colonoscopy Loopholes please visit www.fightcolorectalcancer.org.
My story did not have a happy ending, but this does not mean yours can’t.