"I share my story because I am no longer scared."
I am JAK2+, Diagnosed with ET in March of 2015. I had my BMB in June of 2015 and confirmed ET, as well as MF and SM-AHNMD.
I'd never heard of MPN's prior to my diagnosis. However, learning more about these diseases was not very surprising for me. My grandmother died of Leukemia in the mid 1980's. Science was not as advanced back then and my mother and I have been tested for Leukemia often since then to ensure we don't have the markers.
I've been in full body pain for many years. I've iron deficiency anemia too. Unfortunatly supplements and iron enriched foods do nothing to rectify my situation.
I had a cesarean with my twins back in 2012, bled out and lost 2.5 liters of blood. A year later my platelets were in the high 800K's. I put myself on aspirin. A year later, I switched primary's and was referred to an Oncologist that informed me that with reviewing my labs, she sees why my previous physician indicated that he sees 'leukemia' as possible in my blood work but not for 10-20 years. Then she told me I have ET. She explained the different types of MPNs and said that ET has the best prognosis in her opinion.
The 'happy cancer face' changed once they saw the MF and referred me to an expert.
Well, that is a whole other story. having 'government' insurance doesn't afford you benefits that having more money does. Not having insurance wouldn't afford me the ability to even find out about the cancer in the first place. My insurance even accepting the out of network rate, was not accepted by the expert or the facility the expert is located at. I'm at a standstill.
I've been on watch and wait. Not systematic, just discomfort with some itching, hot flashes, crawling feeling, aches. No thrombotic events, no history of any and no indications of such. Low risk and on aspirin. Went from 81 mg to 325 mg which actually helps with many of my discomforts.
I've turned to essential oils and essential oil based supplements as well as food nutrient complex and omegas. This has assisted with majority of the remainder of my discomforts. I would still have pain, but not as severe. The only stand out is that my platelets has remained at the lower end of 800K and not enough of a change to indicate any changes. Informed that to goal is to stay below 1M and if I go to it or above, my plans will change.
I was surprised when I found out about ET, confused, scared, sad....so many things went through my head. One thing that helps me to 'cope' with arising issues like my diagnosis, is to investigate, research, study and understand. Understand what I am dealing with, what options are available, what to do and not to do, etc.
I started my lifestyle change, cut out lots of processed foods. I even started making my own detergent, toothpaste, and mouthwash. I started using more organic unrefined coconut oil and unfiltered apple cider vinegar. Adopting a holistic and natural way of life is a whole new world for me, which I feel allows a better understanding of what’s going on with me. Like starting life all over, learning how to walk again, by learning what 'food' is, what medicinal does and so forth.
I share my story because I am no longer scared. I have come across many people in the MPN community that live with this disease, with lots of pain. It's ironic how just cleansing with lemon and cucumber infused in their water helps them feel better. I've also assisted others even without an MPN with other non-cancerous health issues. My journey with this cancer is a blessing and a curse at the same time. Without it, I would have still been blind to the world, if not it would at least taken me much longer to come to the realization that I've come to now. MPN Research Foundation has assisted me with a multitude of information as well. Much more than I found anywhere else when I was searching for answers and didn't know where to go.
I'm in a better place today, one day at a time. In a year from now I hope to be in a much better place than I am now, I want to help others along the way. I'm one of the Admins on a FB support group now. I still work full time, am 35 years old, I have 3 year old twin daughters and a 9 year old son. Happily married to my best friend who is also my support system. I want to do as much as I can with my family and for others while I can, until I can no longer. It may be 5 years, 33 years or even 60 years. My husband whom is 18 years my senior, still feel that I will outlive him!
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.