“Get your affairs in order; we have to treat immediately; average survival rate is 6 years” – those were jarring words for someone in his early 40s to hear
My life so far has been an exciting journey, punctuated by a cascade of medical events. Never a dull moment. You don’t know how you’ll respond to bad news until you are faced with it. I’ve had plenty, but there has always been hope.
I decided to publicize my experience as a person suffering from Waldenström's macroglobulinemia (WM) because, regardless of the importance of sharing clinical and therapeutic aspects with other patients, my own has turned out to be one of the (not very rare) cases in which the disease affected two members of the same family. And more to the point, it did so in different shapes and ways. For this reason I can state that my family's history has in the past been influenced by the manifestation and evolution of this pathology, as it is today and as it will be in the future.
As someone living with an “indolent” cancer (slow to develop, treatable, but so-far incurable) for the last dozen years, I have decided that the best way for me to think of it is as a hobby.
Julianne Flora-Tostado became a caregiver after 41 years of marriage and on the same week her husband retired in seemingly good health.
I had indolent WM for twenty years, but amyloid deposits in my lung hospitalized me eighteen months ago. I discuss my experiences with Rituxan, ibrutinib, and an autologous stem cell transplant (ASCT).
I waited for months before I made the decision to write this simple page about my story. I don’t know what the exact reason for my hesitation was, but I believe I was not ready or not completely convinced that I wanted to do it.
"I think I feel something," murmured the nurse practitioner during a GI appointment. I was initially there to schedule a colonoscopy. Lying on the exam table I strained my head upward wondering if I could possibly see what she was feeling.
My story begins in 2011, when I was 55 years old. I had been a professional ballerina, blessed with good health and good eating habits.
It was June of 1995. I was about to have a very special week. What I thought was going to be special was that on this particular Monday, my wife Sue was flying to Tallahassee, Florida, to defend her doctoral dissertation at Florida State University.