By guest blogger Jenny Powell Grosvenor
For the past five years, I’ve been living with ET. ET is alien to most people, but my experience with it doesn’t much resemble a Steven Spielberg movie, except that it has been an adventure. My ET is Essential Thombocythemia , a rare blood cancer in a family of diseases called Myeloproliferative Neoplasms (MPN), which also includes Polycythemia Vera and Myelofibrosis.
The Leukemia and Lymphoma Society (LLS) defines MPN as blood cancers that begin with an abnormal change in a stem cell in the bone marrow which leads to an overproduction of any combination of white cells, red cells and platelets. ET affects the platelets, which assist blood clotting.
What I expected to be routine blood work eventually resulted in a referral to a hematologist/oncologist. He immediately suspected ET, but as I soon learned, it can be difficult to “officially” diagnose.
Although it was arguably the bumpiest ride of my journey, I’ll spare the many details of doctors and tests, and simply say it was more than a year from the day I met my oncologist to the day I began full treatment. Imagine having an entire year to digest that you probably have cancer.
What helped me through that first year was the support of my family and close friends, my own faith and the comfort of knowing that if diagnosed my prognosis would likely be good. Still, there was a daily struggle with uncertainty, fear and a sense of loneliness that comes with the diagnosis of a rare disease.
All MPN are considered rare diseases. According to the MPN Research Foundation, less than 300,000 people in the U.S. live with an MPN. Thankfully through social media and the Web, it’s been easier to connect with others who can most closely relate. Advocacy groups like MPN Advocacy and Education International help as well.
When a bone marrow biopsy gave our best confirmation that it was ET, my oncologist added hydroxyurea to the aspirin and iron regimen he had already prescribed. Hydroxyurea is an oral chemotherapy drug that suppresses the bone marrow. For many, chemotherapy conjures images of hair loss and severe sickness. Thankfully that is not always the case, because unless they find a cure for ET, I will be taking it for the rest of my life. Starting the drug was scary, because I did not know how it would affect me. Four years later, the side effects are uncomfortable, but fortunately manageable.
My life has changed a lot since my diagnosis, but I choose to focus on the positive. Learning to accept the limitations caused from the chronic fatigue and other symptoms may be the hardest part of my journey. But I believe everything in life happens for a reason, and I am grateful for the lessons I have learned and am still learning, and for the good prognosis that should allow me to continue to do so. I take better care of myself, have more compassion toward others and myself, and have met some wonderful people through the MPN community.
Another way my husband, Michael, and I cope with the illness is by helping to raise money for organizations like the MPN Research Foundation and the LLS. The team we created for this year’s LLS Light the Night Walk, MPN Awareness, raised more than $2000. We never give up hope that blood cancer researchers will find a breakthrough that will lead to a cure for MPN in my lifetime.