where-are-they-now[Editor’s Note: Over the years Patient Power has heard from many patients and care partners. With our ongoing “Where are they now” campaign, we get an opportunity to check in and hear updates from Patient Power’s amazing community members. In this blog, Diana Riley shares with us her latest news. For previous conversations with Diana, click the link below.] 

Diana’s Story: A 17-Year MPN Journey

“…For the times they are a-changin’.” Bob Dylan wrote those words in the 1960s and, though change is never easy, those of us with MPNs are happy to see change. When I was diagnosed with essential thrombocythemia in 1997, every article I read put the life expectancy at about ten years. Thanks to excellent medical care, I am still here and doing well 19 years later.

TheTimesSwedenIn 2013, my original hematologist referred me to an MPN specialist, Dr. Brady Stein. He reviewed my previous bone marrow biopsy slides, and determined that what I actually had back in 1997 was not ET, but prefibrotic myelofibrosis, a term that did not even exist back then. So my diagnosis was changed to primary myelofibrosis. I already knew that I was JAK2 negative, and in 2014, I found out that I am CALR positive.

For many years, I was on anagrelide (Agrylin) to control my platelets. It worked very well for me, keeping my platelets in the 300s. I did have cardiac side effects from the anagrelide, which I had to plan my exercise around. It also lowered my red blood cells, and I was anemic for many years. Because the anemia happened gradually, I had no symptoms from it. I was still able to work, exercise and do everything I wanted to do. When I started seeing Dr. Stein, he weaned me off the anagrelide and onto peginterferon alpha-2a (Pegasys), which I continue to take today. My platelets run a little higher on the Pegasys, but I am no longer anemic. I also take clopidogrel (Plavix) and low-dose aspirin. I started these shortly after my diagnosis, as I had had a few episodes of visual disturbances. That was the only symptom of my MPN. This combination of blood thinners has prevented any further episodes.

When I first learned that I had a bone marrow problem, my first thought was, “I’m going to die.” I started making mental plans for my children’s futures, for my daughter’s wedding. When I got my MPN diagnosis, I was actually relieved, as it was much better than the worst-case scenario that was going on inside my head. Fast-forward 11 years to my 50th birthday. My supervisor at work commented that her 50th birthday had been a hard one for her, and she asked me how I felt about turning 50. I had never even thought about it. I told her that, at one point, I did not know if I would make it to my 40th birthday, so 50 looks pretty good. I continue to cherish each birthday as they truly are a gift.

Life today is as busy as ever. My husband and I recently celebrated our 40th wedding anniversary. We have three adult children who are all married. We also have nine grandchildren, one boy and eight girls, who range in ages from 3 to 13 years. They keep us busy with baseball and softball games in the summer, and basketball and volleyball in the winter. Our county fair recently ended. We spent a lot of time there watching two of our granddaughters show their horses. Their younger cousin was involved in mini 4-H, and she walked a pig, a cow and a mini horse. She also had a chicken at the fair all week. Of course, we had a corn dog and an elephant ear while we were there

When I am not involved with my grandchildren, I have a small vegetable garden, I work in the yard, walk the dog, crochet and make stained glass. I continue to work. I am a registered nurse, and I work with people who have diabetes. One thing I have learned is, a diagnosis of a chronic disease is never easy. It is truly a life-changing event, and some people need help accepting their diagnosis. Some of my patients have had their heads buried in the sand for years, ignoring their disease, and paying a hefty price in the end. It makes me sad that they did not get the help that they needed sooner. But do not let yourself be defined by your condition. I want to be someone who just happens to have myelofibrosis, not an MPN patient.

Over the years, I have attended several MPN patient educational events, and I even spoke at a Patient Power event in Chicago, in June 2014. These events are wonderful opportunities to learn about MPNs. The best part, though, is meeting other people with your condition. MPNs are pretty rare, and it wasn’t until I attended a conference in the fall of 2012 that I met someone else with an MPN. I actually keep in contact with two people who I met at these conferences. If there is one in your area, I would encourage you to make arrangements to attend. I would also encourage you to try to read as much as you can about your MPN. Ask your doctor questions about your condition and treatment plan. Knowledge truly is power.

When I was diagnosed with my MPN, I asked what I could do, besides take my medications. I was told to try to stay as healthy as I could—to eat a balanced diet and exercise every day. I have to say that I have tried to be a “good patient,” and I have done this to the best of my ability. When that miracle cure comes along, I want to be healthy enough to receive it! There is so much more research on MPNs now, than when I was diagnosed. At one point, I actually had become complacent and had quit seeking information about MPNs, as there was no new information. Not so now. There is a lot of research going on, with many new developments. This is all very encouraging for those of us diagnosed with an MPN. So Bob Dylan was right, “…the times they are a-changin’.”

No time for complacency,

Diana Riley