The Other F-Words - a column by Ruth Fein

As a health and life sciences reporter and a patient advocate for people living with rare cancers, including my own myelofibrosis (MF), I share people’s insights about living with a chronic cancer. If just one patient is empowered to know that they aren’t alone; is able to share with…

I locked myself out of my house yesterday. I had been on a lovely walk with two friends. We drove to the beach where there’s a beautiful boardwalk that hugs the shore, meandering through marshes and looking out over huge sand bars and flocks of nesting feathered waterfowl. The plan…

So many of us are fortunate to have family and friends who help and support us in our daily lives with myelofibrosis (MF). Sometimes it’s helping with errands. Sometimes it’s accompanying us to the doctor. I like to use the term “care partner” rather than caregiver. What’s the…

It’s been a stormy week here on the East Coast. Trees are down, there’s coastal flooding, and the power’s been out. As I often do in these columns, I’ll tell you what this seemingly unrelated occurrence has to do with living with myelofibrosis (MF). Four people I know recently…

Living with myelofibrosis (MF) can have perpetual ups and downs. Even when well managed, it is a condition that is chronic, and typically changes over time. So what happens when we’re sailing along, doing well and — wham! — we experience a scare? Welcome to my week. It might seem…

I keep an ongoing list of “the other F-words.” These are the ones we can say out loud, not under our breath when we’re angry or exasperated. At the top of the list are “facts” and “fear,” which I wrote about in a two-part column last month. Second in the…

The thing about myelofibrosis (MF) is that it is different for everyone. Yes, I know, you’ve read this before. But let’s dig deeper. I know people who have had virtually no symptoms for two decades. I also know people who are transfusion dependent and have to schedule…

One Sunday morning in March a few years ago, as the world remained in lockdown due to the COVID-19 pandemic, I answered my phone and heard my son ask if I’d seen the latest edition of The New York Times. I pulled it up online and there, on the homepage,…

Living with a rare disease brings unique challenges. Myelofibrosis (MF) is no exception. What puts MF in a category unfamiliar to many — newly diagnosed patients, family, and friends alike — is the second “C” in its “Big C” label. MF is a chronic cancer. What this means is…

We each get our inspiration from our own (sometimes) fleeting moments. Tonight, I listened to a brilliant live concert by world-class musician friends. And the beauty of it? I didn’t even have to be there. I enjoyed every second, livestreamed straight to my breezy back porch. When it comes to…