Inspirational Stories

I was first diagnosed with a myeloproliferative neoplasm (MPN) called polycythemia vera (PV) in 2012. I must admit, I was a bit overwhelmed when they said the “C” (cancer) word and then the “R” (rare) word. I have been living with a handful of rare diseases for some time and now a rare cancer. At that time, there was limited information. I started to research MPNs, attended some conferences, talked with a social worker (Amy is my hero) at The Leukemia & Lymphoma Society (LLS), and connected with the MPN Research Foundation and MPN Advocacy Foundation. By doing this, I found some reliable information about my type of cancer and have developed lasting friendships with others who share common ground in this diagnosis. In my research, I also found and connected with an MPN wizard (care provider), Dr. Verstovsk, and now my new MPN wizard, Dr. Pemmaraju. I have more peace knowing that my care providers specialize specifically in MPNs.

I have found that living with a rare MPN can be overwhelming because it is chronic, and there is currently no cure; however, there is so much momentum in the research of this type of blood cancer. I have found that there are a multitude of ways to cope with a chronic cancer diagnosis. First and foremost, I had to just calm down and breathe. I remembered a couple of key facts. First, this is chronic and rare, but that does not mean nonexistent or unheard of.  Second, I educated myself. It is important for me to know some key facts about my type of MPN like the symptoms and the risks. Third, I had to learn how to communicate with my care team and my loved ones. That is important when living with any illness, especially an MPN. Lastly, I had to accept that I was living with it.

I have learned to hold onto my faith with a little grit and allowed myself some grace.  I have learned a valuable life lesson ― I live with unexpected things all the time, and I have learned that expectations can set limits on one’s real potential. In the end, God wins. I am going to enjoy the journey.