MPN Awareness Day
Last updated: August 2023
September 12 is MPN Awareness Day! To honor this day, our advocate, Deb Wesloh, talked about her experience living with polycythemia vera and shared some of the things she's learned about raising awareness of these rare blood cancers.
What led to your diagnosis of polycythemia vera (PV)?
I actually found out about my PV through a routine physical. My primary care doctor noticed that all my blood levels, especially my platelets were elevated. He referred me to a hematologist at Brooke Army Medical Center. He did a number of specialized blood tests - including the JAK2 gene mutation test - one of the markers for a PV diagnosis. That test came back positive. I had a bone marrow biopsy a year later which confirmed that I had PV.
This diagnosis was a complete surprise as I was generally heathy. I didn't really have any symptoms...or at least at the time I didn't attribute them to having PV. In hindsight, I likely had PV for quite a few years without realizing it. I couldn't eat much with out feeling full (early satiety) from an enlarged spleen. I was frequently tired. Not just tired, but bone-weary tired. I found out this had a name...fatigue.
What surprised you most (or was most unexpected) about living with an MPN?
The "thick blood" from the overproduction of red blood cells can impact almost every organ and system in your body. Before treatment I had an enlarged spleen and liver, portal vein hypertension, fatigue, chronic itching, weird vision zigzags disturances (called auras) and an ulcer. Fortunately, treatment has resolved most of these issues. Others with PV may experience bone pain, gout, shortness of breath, headaches, dizziness and cardiac issues. Bottom line - PV can affect any part of your body.
What was the most interesting thing you've experienced since diagnosed with an MPN?
My breast cancer diagnosis came almost exactly two months after the PV diagnosis. Not that I would wish having both at the same time on anyone - but it was actually an advantage. There is almost a symbiotic relationship between the PV-induced elevated blood levels and the breast cancer chemotherapy. Since chemo usually lowers blood counts, I didn't have to worry about treatment for controlling my high blood levels for the PV. It also made my chemo experience relatively easy and uncomplicated as my blood counts never dipped below normal.
How has raising awareness become a part of your life since your diagnosis?
I initally searched for ways to get the word out and to provide awareness of this cancer that I had never ever heard of prior to my diagnosis.
First was an unsuccessful attempt to start PV support group. Although there was some interest, it was difficult to actually meet in person because there just simply wasn't that many of us in my area.
I began telling my story at a number of cancer-related functions. Although I enjoyed storytelling, public speaking wasn't really my forte. So I focused on writing instead and got involved with Blood-Cancer.com. So here I am - a regular contributor sharing my stories to raise PV awareness.
What are ways people with MPN and loved ones can get involved in raising awareness?
Be your own advocate. Nobody knows your body better than you. Learn about your disease and your treatment options. Find a myeloproliferative neoplasm specialist in your area.
Connect with others and learn. Join the numerous on-line forums that exist for MPN. There are also a number of MPN organizations that hold webinars and conferences.
Support research and participate in applicable clinical trials.
Tell your story (you can tell your story at Blood-Cancer.com here!). Whether it be keeping a private journal or sharing it through a blog or a short story or even as an Congressional advocate. Everyone's cancer story is unique and interesting and worth sharing.
Most importantly, don't let this cancer define you!
What blood cancer were you diagnosed with?