By Bob Mayer
New Britain City Journal
Veterans Day started as a remembrance of the end of World War I on the 11th hour of the 11th day of the 11th month. It has turned into and been legislated into a day to remember veterans of all wars living and deceased.
But what about veterans’ spouses? What about the husbands or wives who have been left at home to take care of all the commitments including raising children, paying bills, acting as both parents and anything else that comes up?
One such military wife is Caroline Lukasiewicz Johnson, who was married to Coast Guard Chief Scott Johnson. Johnson passed away from colorectal cancer on August 16, 2017 at the age of 43 but it has not stopped Caroline from becoming an activist and advocate for early detection and screening and fundraising for educational programs and activities.
Johnson was a member of the Coast Guard for 10 years before becoming a reservist when he became a firefighter in New Britain. Johnson, originally from Chicago, married Caroline in 2008 after being set up by friends while he was stationed in New Haven.
The family had three children and had settled in New Britain when Scott began to have medical issues.
“He went in for knee meniscus surgery and when he came home, he was feeling constipated and felt like something was wrong,” Caroline said. “He told me something was wrong, so we went to his primary care doctor and then got referred to a gastro doctor. There they did an exam and said everything was fine. Let’s start you on probiotics and maybe change your diet a little bit and you should be fine. Scott even asked if he should have a colonoscopy, but they said he was too young. He was only 41 at the time. So, things didn’t get any better, in fact, they got worse. He felt like he had to go the bathroom all the time but then couldn’t go when he got there. We couldn’t go anywhere or do anything because he was tied o the bathroom. Finally, it got so bad we went back and were told he had a big tumor and it had spread to his liver.
“My question was how was this missed, and they didn’t know because the tumor was so big. They totally missed it and now it was stage four. We don’t know if he would still be living if they caught it earlier, but it certainly would have been better.”
Scott tried several different doctors and hospitals and cancer centers to beat the cancer. He went through radiation and chemotherapy of different kinds, some working better than others. There was a time when he started treatment in Chicago Friday through Sunday each week and he seemed to get better.
“We were really hopeful after that,” Caroline said. “There were people who had stage four cancer and live some form of life. We thought this was the one that was going to work.”
Amazingly, Scott kept working at the fire department and serving as a Coast Guard reservist when he was not under treatment. He was tired, but it helped him keep some form of normal for him and his family.
The end came quickly for Scott. His doctor told he and Caroline that they should start thinking about palliative care on July 30th, 2017. Scott met with them and heard what they had to say and told them to get the heck out of the house because he was still fighting. As time went on, however, Scott felt the end was near and asked his wife for a few specific things. He wanted to be buried in Arlington Cemetery with his father, Roy Johnson, a Purple Heart and Gold Star Marine, who passed away in 2010.
“He told me that’s what he wanted and said he earned it and knew I could get it done,” Caroline said. “He was confident; I wasn’t. At one point the Coast Guard told him he was separated with no severance, which meant he wouldn’t get any retirement from the Coast Guard. Luckily the Coast Guard called back, a guy by the name of Craig Breverman, Senior Chief Petty Officer at the Coast Guard Academy, and said he got Scott’s file and was going to retire him with his pension even though he was just short of 20 years.”
Retirement ceremonies are usually held on a base, but the Coast Guard came to Scott’s New Britain firehouse and presented him with his retirement papers on August 9, 2017.
Scott also told Caroline he didn’t want to die at home because of the other loves of his life, his sons.
It was just a few days later when the end came for Scott.
That is when Caroline went to work, and she hasn’t stopped.
She first worked on getting Scott buried in Arlington but at the time of his death, Scott had not received his first retirement check yet, so they couldn’t go forward. It took two and a half moths but on Nov. 3 he was flown from Connecticut to Washington D.C. and he was buried on top of his father. With about 100 members of his family, friends, fellow firefighters and Coast Guard mates watching, Taps was played, and a gun salute was fired before Caroline was given an American flag.
When Scott was still alive, she asked her then 8-year-old son Zack what he wanted for his birthday. He said he wanted to raise money so daddy can be cured. So, they came up with a 5K and have done it two years in a row now and will probably do it again this April. We will continue to look for fundraising options. All of the money Caroline, Zack, now 10, and twins Jake and Ben, 7, have raised have gone to the Colon Cancer Alliance, found at www.fightcolorectalcancer.org.
As if that is not enough, Caroline has gone to Washington D.C. to speak to senators and congress when asked by Senator Chris Murphy.
“The first time he called, I thought it was a joke,” Caroline said with a laugh. “I called back, and he said he was following the story and wanted to know if I would talk to other senators and basically anyone who would listen about Scott’s story.
“My main messages are that you have to be your own advocate, or you need to have someone to advocate for you if you feel like something is wrong. If I knew then what I know now, I would have demanded tests and a definitive diagnosis. I also advocate for early detection for any disease but colorectal cancer because that is what Scott had. I’ll speak to anyone. I stay in touch with people I met in D.C. and people I met at the 5K.”
Her latest and current activity is Chemo Care Bags filled with comfort items for patients undergoing cancer treatment. She and Jessica Silva have combined to make the bags and donate the proceeds to Berlin K-9 Officer Aimee Krygowski and New Britain Police Lieutenant Julia Gallup who are battling cancer. Each sponsored tote will be filled by the Johnson family and the totes will be sold for $22. The totes will then be delivered to Grey Cancer Center in Avon and St. Francis Hospital.
To sponsor a tote, send payment to Jessica Silva via PayPal using the friends and family option to