by Michael Movsky
My MPN journey began at the hematologist’s office on a pleasant March day in 2018, when she confirmed a diagnosis of Essential Thrombocytosis (ET) through various factors, including the detection of the JAK 2 mutation…at which point I was handed an informational booklet on the topic from the Leukemia and Lymphoma Society. She told me that there should be little to worry about until I turn 60 and ordered me to use a daily, low-dose aspirin. However, I would require regular lab work to monitor my blood counts. As I was 48 years old at the time, there appeared to be plenty of time until treatment was to become a bit “trickier.” Finally, when my doctor asked me if I had any questions, my response was, “So I am living with ET…Do I need to maintain a regular supply of Reese’s Pieces?”
Although the diagnosis did not appear to be especially formidable and the treatment plan was straightforward, I was left feeling perplexed because of the fact that I was feeling poorly at the time…to the degree where I needed to take a pause from working…and was being told that what I was experiencing was unrelated to the ET. My chief complaints included fatigue, an upset stomach, and dizziness. I did see my gastroenterologist who, through examination of my stomach, discovered moderate to severe inflammation, in addition to excessive bile reflux. Although symptoms occurred simultaneously with the initial rise of my platelet count, I was assured there was no connection. Through altering my diet by eating small portions of easy to digest food, I gradually began to improve and eventually went back to work.
In early 2020, I was offered a full-time position on the production team at MG Foods (Melbourne, Florida) plant. I loved my new job and made a positive impression on my superiors within a relatively brief period of time. However, in the March of 2020, I began to feel sick once again…with an upset stomach, upper abdominal stiffness and significant fatigue…like that feeling you get when coming down with the flu…and it was persistent…to the degree where I unfortunately, had no other reasonable choice but to quit my new job.
Meanwhile, my hematologist retired from her office to better concentrate on her position with Hospice. I explained my situation to her replacement. Between my symptoms and the fact that my platelet count was on the rise, he prescribed me Hydrea last Fall. Interestingly, the new hematologist explained to me that what I am experiencing is likely a result of “less overt, textural changes in my spleen” and the chemo should benefit me. He said this is actually quite common among MPN patients. When I started the HU, my platelet count was just shy of 800,000…by no means, a record-setter, however, between the significant symptom burden and the platelet rise TREND, the doctor thought that it was a good time to begin treatment.
The Hydrea (HU) was rapidly effective…my platelet count dropped quickly…as a matter of fact, back down to normal range within a six week period. My appetite returned, and the dizziness abated significantly. And, the side effects from the HU are minimal, the most significant adjustment was the morning drowsiness.
Today, my platelet count (as per the most recent lab work) remains in normal range. However, a return of digestive problems is creating a significant issue for me…upper abdominal stiffness and filling up after only a small amount of food. I eventually got a second opinion with a new gastroenterologist. As per his recent upper endoscopy, the doctor discovered “excessive fluid” in my stomach and he is suspecting gastroparesis (further testing is scheduled for May) with little in the way of suggestions. The connection between the peculiar digestive matters and ET remains unclear. However, I have found that sticking with liquids, and small amounts of soft/pureed foods helps me to avoid the discomfort to a degree. But, with this, comes the challenge of adequately nourishing myself. The frustrating thing is there appears to be more questions than there are meaningful answers.
It is also worth mentioning, that family members are an important consideration with our journey experiences. I realize that my wife, Olivia, must adjust to certain changes. Like, the fact that I am unemployed and in the process of Social Security Disability review. However, in terms of this particular matter, it is only fair to include the fact that Olivia, who suffers from (military service related) PTSD, actually appreciates having me home. We are catching up on a variety of household projects lately. Also, mealtime is not exactly what it used to be. She has gotten accustomed to seeing me open a jar of Beech Nut for myself at the dinner table.
Research and social support are so important when managing any condition, especially when it’s rare. I manage a couple of other health conditions in addition to the MPN…but the timing of my ET diagnosis has it’s significant advantages. These days, with the variety of internet resources and Facebook support groups…there is gratefully, no reason to feel alone. I feel connected due to my participation in the multiple MPN related support groups available to patients and their families, including MPN Support Group and MPN’S R Us, where I thoroughly enjoy presenting my regular column, Topics From the Tropics.
I am still in the early stages of my MPN journey and although symptom burden has significantly influenced my life, I am sincerely optimistic about my future. I believe that a better understanding by doctors in terms of my own personal case, in addition to advancements being made in the world of medicine, shall ultimately lead to healthier and more fulfilling lives for everyone.