PATIENTS IN ACTION
ASH IMF Reception 2014
“Knocking it Down”
It’s when the fire is out that the danger’s the greatest.
You see, you’ve already knocked down the flames. You’re feeling relieved. The edge is off. You start doing what we firefighters call “overhauling,” making holes in walls and ceiling, hunting for where the fire might be lurking. Smoldering, waiting to come back.
All these weird-colored smokes are pouring out: black, green, yellow. The things that off-gass from fires, especially in old buildings with asbestos, turn into poison gas. There’s so many chemicals, some of them haven’t even been identified. And you’re breathing in that junk. It’s invisible, but it’s all around you. Getting in your lungs and in your pores.
But it’s still hot. So you take your mask off. In fact, when I first became a firefighter, the old guys were proud of it. That was the culture. We called them “leather lung Jakes” ‘cause they could breath in anything and be fine.
Except now we know, they were not fine. In fact, it turns out the average firefighter doesn’t live five years past retirement. Mostly, it’s cancer that gets them.
I entered the Boston Fire Department in 1982, and worked at two, not so busy, firehouses, before transferring to Engine 52 ,Ladder 29, Dorchester, MA.
Becoming a firefighter was not a lifelong dream of mine, but the job opportunity became available. I quickly learned it’s more than a job. It’s a brotherhood. You meet people from all different parts of the city, and that forges friendships I wouldn’t trade for the world!
In 1992, I went in for a regular check-up. The doctor told me I had something called monoclonal gammopathy. It meant my plasma cells weren’t working well even though I felt just fine. She also told me that it could lead to blood cancer down the line, but not to worry about it. I just needed to come in for blood work every year, and if things were fine, I wouldn’t hear from her. That was fine with me, because I’d read about multiple myeloma, and what I saw back then was frightening.
And for nearly 20 years, I didn’t hear from her. The funny thing is, right before I did, I read about a New York City firefighter who got myeloma and the city was not going to cover him. I thought that was just terrible.
The story was still fresh in my mind when I got the call. That was 2011.
A few days later, it turned out, I was diagnosed with myeloma too.
But there’s a benefit to being a firefighter in Boston. It’s a Massachusetts law called the Presumptive Disability Law, Chapter 32, Section 94B. It covers most types of cancer for firefighters from the day you’re diagnosed. Myeloma is one of them.
Basically, the City of Boston “owns” my multiple myeloma. I feel blessed, because everything is covered, unlike that poor guy in New York. And it was my union, local 718, that made it happen. They lobbied for it long before I was diagnosed.
But I’m especially pleased to meet you all tonight, because on Beacon Hill, they’re trying to dismantle it. They’re trying to cut out myeloma. We’re going to have to fight to keep it law.
When I was diagnosed, a there was a trial going on for a new myeloma treatment and I got in. Another blessing.
It’s called MLN-9708 and it’s keeping me alive. And it’s just two little pills. I get to take the at home.
It’s knocked my myeloma down to a chronic disease. But I know, just like with the fires, the danger’s still there. But I get to be here every day. And I feel good!
And I can still do the things I like. I’m here with Carmen, my wife of 33 years. We’ve got four children and seven grandchildren. Everyday, I pick my granddaughter, Kayla, up from school. We get her homework done while her parents are at work.
And there’s another “grandchild” I take care of. His “parents” work too. But he’s a little different than the others: He’s got four legs. He’s an American Bulldog named Rambo. And with him, we focus more on catching than arithmetic. But when my son’s on the job, Rambo and I go to the park. Toss the ball around.
In the warmer months, I like to hang out at the park with a group of retirees. We’re from all walks of life. We sit on lawn chairs. I put a little blues and R&B on the IPad. Talk a little politics. A little sports. And just take our ease.
But once a month, I meet up with a group of retired firefighters for breakfast. I never miss that one. You see, some of us have cancer. We don’t know if we’ll see each other next year.
My son’s a firefighter now. I tell him, “Wear your safety gear as long as you can.” And I’m happy to say that he does. You see, for firefighters, it’s all about going home.
I’m blessed. I’ve got a great family, and church and doctors and fellow firefighters.
But out here in San Francisco, meeting you folks who know about myeloma, who know about firefighters and myeloma, I feel like I’ve found another home.