My intent for this blog is to share information about my husband’s battle with primary myelofibrosis. It’s a rare bone marrow cancer, and most of what I’ve read online is technical/research information, much of which is hard to interpret for the non-medical professional. I thought others might find this helpful–to know they’re not alone–to experience this journey alongside us. I want to share what I’m learning about the disease and maybe lighten someone else’s load.

​It’s a perfect day to start this blog. It’s our 37th anniversary. We met in 1980 (when I was a young teen), fell in love in 1982, married in ’86 and started a family in ’88. R’s journey with primary myelofibrosis began in February 2023 when a visit to his family practice physician revealed that the usual blood tests she ran prior to his appointment showed a high lactate dehydrogenase (LDH) count. LDH is an enzyme that is present in almost all body tissues. Conditions that can cause increased LDH in the blood may include liver disease, anemia, heart attack, bone fractures, muscle trauma, cancers, and infections such as encephalitis, meningitis, encephalitis, and HIV. The normal range is 121 – 224. R’s came back at 729 and then 770 when they re-ran the test. At that point, his doctor referred him to a hematologist who said R needed a bone marrow biopsy to learn more and hopefully, determine the cause.

​Weeks later, we had the results from the biopsy: a diagnosis of Primary Myelofibrosis (PMF), an aggressive cancer of the bone marrow. I’ve done a bunch of online reading since then and learned that Myelofibrosis is rare, with about 1 1/2 cases reported per 100,000 people each year in the United States. Thus, there aren’t many doctors who specialize in the condition or can speak to it from experience and expertise.

​R also has numerous gene mutations associated with PMF including JAK2+, ASXL1+, TET2+, SRS2+ and CALR-. I’m still trying to better understand what these gene mutations mean, but I know that in this particular combination, they indicate a poor prognosis: a 2-3 year lifespan from time of diagnosis. The only known cure is a bone marrow transplant (stem cells originating in the bone marrow). The transplant is highly toxic, and not everyone survives the process, although it seems like survival rates are improving over time. We meet with the transplant team doctor at Fred Hutchinson Cancer Center in Seattle this Thursday, July 27th to learn more about it: optimal timing, risks, potential donors, process, etc.

​We’re experiencing a mix of reactions from fear to anxiety to numbness and avoidance. Who would have ever thought we’d be in this predicament? R is only 61-years-old. After 37 years of marriage, we adore each other, we are two halves of one. We only recently retired and spent the first two years in COVID lock-down and taking care of my aging, medically frail parents who both passed away in the last year. We’ve had dreams of traveling our whole lives. We raised our three kids, worked hard, saved as much as we could and are ready to experience more of what life has to offer, together.

​What will happen now? How sick will R get before, during and after the transplant? Is he even a good candidate for a transplant or will factors such as his gene mutations prohibit a transplant?

​Frankly, it’s terrifying to think about a future without him, and I can’t bear to think of him suffering. But, what choice do we have? We’ll go through it together–whatever the future holds, no matter how hard it gets. In sickness and in health; in good times and bad.

 I’ll write more soon.