Columns

Last in a series. Read part one.  In the first part of this series, I wrote about “the other F-words” we deal with as we go through life, whether we’re living with a rare blood cancer like myelofibrosis (MF) or other chronic health conditions. The truth is, the…

First in a series. I’ve been thinking about “the other F-words” we deal with in life, whether we’re living with a rare blood cancer like myelofibrosis or any chronic condition. And truthfully, the same words often challenge us in our careers, family life, and day-to-day interactions with others. In…

The good news: We are here, living with — and for many of us, thriving with — a cancer that we are able to manage, though sometimes better than others. The challenging news: No matter how well we might feel and how well our medications might work, myelofibrosis…

A few months ago, I walked 100 kilometers in northwestern Spain. That’s about 60 miles. It was the final trek of the legendary Camino de Santiago trail that starts in Sarria and ends in Santiago de Compostela. It was a magnificent adventure for the eyes and spirit — offering stunning…

Getting your head around myelofibrosis (MF) is tricky. It can look and feel different at different times and can vary greatly among people who live with its symptoms and potential complications. If you’re feeling uneasy that you don’t fully comprehend everything about your own disease, rest assured, you are…

Let’s start with the good news: If you ask Dr. Google about living with myelofibrosis (MF), a rare chronic blood cancer, much of what you read may be very outdated. That includes alarming old data about life expectancy and quality of life. To get the real story about what…

Until my myelofibrosis diagnosis, I didn’t really understand invisible illness. I understood pain that comes and goes, the kind most people experience. You pull a muscle, bang your head walking into a door, or hurt your back in the gym, and your body reacts, then eventually settles down again.

If you’re reading this, there’s a good chance you might be looking for answers. This is a myelofibrosis website, after all. Nobody ends up here accidentally. I’m sure that many of you arrived after a diagnosis, while searching forums late at night and trying to work out what…

The first thing I was told after hearing the words “You have cancer” was not to Google it. The first thing I did was Google it. It was instinctive. I was trying to take control of something that had just knocked me off my feet, and information felt like the…