On the one hand, I would like to say that my husband’s myelofibrosis (MF) “situation” is new to us. He was officially diagnosed last summer. On the other hand, we are realizing now that he has been living (and at times suffering) with the precursors to MF for many, many years. We just didn’t know. His symptoms and bloodwork were attributed to “something else” or part of “getting older.” I wish we had known sooner. He would have been spared so much agony.

Jimmy has always been healthy. He is conscientious about diet and exercise. His goal has always been to live longer than Willie Duberry, whom he had seen featured as the oldest living man in a Timex Watch advertisement as a teen. He meant it and I believed him! This diagnosis and the toll it had taken on his body, mind and spirit was devastating. For me, my world was rocked to its core. Early on, an ill-informed doctor suggested that my husband may only have three years to live. It was time to get busy and learn all we could about blood cancers and what the next steps would be.

Enter the MPN Research Foundation! In the online literature, spouses and others are often referred to as “caregivers.” To be clear, I am not Jimmy’s caregiver. He is 100% independent and takes care of himself and others daily. So then, who am I in this corner of our life? I think I would call myself his “IG” or information gatherer. This is something I can do. Through the MPN Research Foundation and the plethora of information gathering and sharing THEY do, I have come to understand blood cancer much more clearly and the efforts that are being put forth to manage, hopefully cure or put MPNs into permanent remission. I then share the pertinent information with my husband. It was through the MPN Research Foundation that we learned of a clinical trial out of the Cleveland Clinic which seemed to meet Jimmy’s needs. Dr. Aaron Gerds is the hematologist overseeing this trial. A very long story made short: Jimmy began the trial on Feb. 24, 2022. On Feb. 23, he had 10/10 pain, an enlarged spleen and difficulty walking, just to name a few symptoms. Three months later, he told me he would like to hike the Canadian Rockies with Kerry Fraser!

Sole 2 Soul was brought to our attention back in May by Jimmy’s long-time friend, Kerry Fraser. Both spent their careers in professional hockey. At that time, Jimmy was only a few months into his clinical trial and I was concerned. I was mostly concerned because I knew that if he decided to go, he was going to finish, come hell or high water (Jimmy is an all or nothing competitive man). He planned to participate and I was delighted to be asked to go along. As the months and even weeks have gone by, I have witnessed nothing short of remarkable progress! He is not in “perfect” health but his pain has dropped dramatically and he is quite active. On the outside looking in, nobody would know the battle his body is fighting inside. We are very much looking forward to this trek and wish the MPN Research Foundation great success in their fundraising efforts overall! They are making a difference in all of our lives!