Published on August 5, 2019
Greetings Patient Power MPN community!
Let me introduce myself. My name is Julia Olff. I’m many things including someone living with secondary myelofibrosis (MF). I’ve been living with MF for 11 years so far, after being diagnosed with essential thrombocythemia (ET) the prior year. I believe I had ET for at least 12 years before being diagnosed but no provider picked up on it; more on that in a bit.
On the personal side, I’m 57, married for the second time to a wonderful man, a parent to five young adults scattered about the East Coast, grandparent to a 3-year-old adorable burst of energy, the family health manager, and caregiver for one adult child struggling with mental illness. Among my siblings I’m also the health navigator and healthcare proxy for our 85-year-old active, long-life New Yorker mom aka ‘the energizer bunny’ who only recently retired from her second career and is a survivor of lung and bladder cancer.
My husband and I recently moved to urban New Jersey across the river from New York City, after 25 years of living in the New Jersey suburbs. I’m an urbanite at heart - I took the subway to high school in Brooklyn and only got my first car at 34 - which shocks many people. But I do now appreciate the quiet of green spaces and fewer crowds but still love city energy, the diverse rainbow of people, access to cultural events and cuisines of the world. I’m an avid reader, food show watcher and recipe sampler and to my amazement a watcher of gardening shows on Netflix.And I have to mention my fuzzy children who keep me company.
Professionally I stopped working full-time and transitioned to very part-time, freelance work when the symptoms of MF: deep fatigue, dizziness, headaches, body pain and a mini-stroke made full-time employment too challenging, and stressful. At the time walking the dog one block was exhausting. I looked like a turtle pulling a dog on a leash. My arms felt like they had sandbags attached to them. My thighs, hands and feet throbbed and got worse as the day went on.
I’m know I’m fortunate though that as a certified health educator and former hospital administrator I’m able to continue to have some stimulating, intellectual professional value and do so largely from my laptop at home. I’ve recently become more involved with myeloproliferative neoplasm (MPN) patient organizations like Patient Power and MPN Advocacy and Education. As someone always thinking about what patients and their family need in terms of education and support, I hope to contribute to improving the MPN patient experience. I’m also a First Connection Peer Volunteer for The Leukemia & Lymphoma Society (LLS) talking by phone with people newly diagnosed with an MPN. I’ve spoken to folks from the four corners of the US, who most often are just wrapping their minds around what these rare diseases mean for their health and their lives. I hope my longevity provides some hope for them.
A diagnosis with ET felt "out of the blue"
I was first diagnosed with essential thrombocythemia (ET) in 2007 after routine blood work for my annual physical showed my platelets were close to 800. I came home one day to a voice mail message from my primary care doctor’s office suggesting I see a hematologist right away. Huh? I called them back. Why? How soon is soon? I was caught off guard. How could I have an illness? I’m still young. I had always been very healthy, and rarely took a sick day. I was physically active, never smoked and ate fresh food all my life. I was the kid who would eat my class mates’ veggies in their school lunch. I was also busy working full-time, dating my now husband, parenting school-age children and blending our family of five kids and two dogs. I didn’t have time for illness!
MPNs were not yet officially identified as cancers so I never got a big “C” diagnosis. It was much more gradual. I went to see a very lovely, caring general hematologist/oncologist who I still see for medical marijuana management. The first bone marrow biopsy had showed I was not positive for JAK2 (a subsequent bone marrow biopsy showed I was) but did have a 5q deletion genetic mutation, more associated with myelodysplastic syndrome. I was started on daily aspirin and needed some convincing to take it. Although I understood the importance of treating disease, I didn’t understand the implications for my health and information on the Internet was limited. I had a hard time wrapping my head around the idea of taking any medicine every day and I didn’t think I had symptoms.
In retrospect, I discovered my old lab print outs (before health portals) showed I had elevated platelets going back to 1995 that were slowly creeping upward! I did have periodic severe migraines that would send me to bed for the day and bouts of fatigue that would take hold, in the years prior to the ET diagnosis. But I didn’t make the connection and the oncologist didn’t either. By 2007 my platelets were in the high 700s/800s and my white blood cells were high as well.
Then came myelofibrosis (MF)
The next year I had another bone marrow biopsy which showed I now had myelofibrosis. The doctor made it clear this was a more serious disease and my online reading reinforced MF is a rare, progressive and potentially fatal. I started to think I was going to die in a few years. The MF diagnosis shocked me into action. I knew I needed an expert with extensive experience with these diseases to get the best treatment and monitoring. I’ve been seeing the same MPN expert at Weill Cornell in NYC since 2008 and hope I can continue to for many years. Over time I’ve been on 5 different treatments; in some cases, returned to a treatment. Each treatment either caused side effects I couldn’t tolerate or side effects that needed treatment or a procedure. The last treatment was the first to improve my functioning and control my counts for 5 years, but I ultimately had to stop taking it.
ER visits and hospitalizations remind me of the power of MF
Over the years I’ve had several ER visits and hospitalizations for acute episodes: mini stroke, ischemic colitis (awful), Raynaud’s attacks (frightening), jaw pain, photosensitivity, squamous cell skin cancers. Some of these episodes can’t be explained by the many physicians I now see, which can be deeply frustrating. And they seem to happen without a sign or cause except maybe building fatigue. And after these events it can take weeks to recover energy and get back to a routine.
Learning to cope with the ups and downs of MF
MF has absolutely altered the course of my life and changed how I live it. The range of symptoms even with treatment, takes a toll on functioning especially when you’re trying to take care of others. I remember how hard back to school nights were having to rush from class to class every 20 minutes up and down the steps holding onto the railing and trying not to get pushed by the swarm of parents. It was exhausting for me. I so appreciated my kind husband handling the bulk of the driving kids to social activities as I stayed home laying down. I finally give up one job in part, because my hands ached from holding the steering wheel, and my thighs throbbed during the long commute home each day.
But I still feel lucky, most of the time to be doing much of what I have always done. Maybe less often, less intensively and with more thought and planning but I still am being who I am. I try to walk each day, work a bit, travel, keep my health educator certification up to date with webinars and conferences.
Yet I do occasionally feel jealous of people my age and older, who have far more energy to do what they want and to stuff their days with plans. I love spending time with my grandchild but feel bad I can’t care for her for more than a few hours. Only my husband, an extremely loving and attentive caregiver, notices the signs of my fatigue and discomfort. Most people see a fairly youthful middle-aged adult and don’t understand why I walk so slowly or why I hobble after sitting or why I bow out of social plans I’ve made.
For today, I appreciate the treatment break and the freedom from some side effects. I am optimistic there will soon be more treatment options and maybe ones that actually slow or stop the course of MF. I try to keep MF in the back of my mind.
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