The Things I've Learned
Last updated: June 2023
Wow! It’s been five years since my dial cancer diagnoses. The first was a blood cancer called polycythemia vera (PV). Invasive ductal carcinoma or breast cancer followed a couple of months later.
Over the last five years of this sometimes-arduous cancer journey, I have learned so much about cancer and myself.
I remember it being a very scary time for me. I expected the breast cancer diagnosis - it ran in the family. However, the polycythemia vera diagnosis was overwhelming. Because I had never heard of it, I started doing a lot of research. Yes, admittedly, I consulted Dr. Google but didn’t take it too seriously, especially when I read it was an old man’s disease. I mean, I was only in my mid-fifties at diagnosis and was definitely not a man.
Initially, also read posts on PV Facebook sites. These, I originally found comforting since I had met no one in person yet who had this rather rare cancer. However, after a while, I found some posts terrifying. Were all those awful symptoms and side effects going to happen to me? Yikes! So I stopped.
Consulting reliable sources
Instead, I turned to more reliable sources, such as medical journals and several PV specific forums like PV Reporter and Patient Power. I also consulted with providers and learned from experts during blood cancer conferences I attended.
I learned PV is a chronic, progressive cancer that is in a class of cancers called myeloproliferative neoplasms (MPNs). A JAK2 gene mutation is a cause for approximately 95% of cases. The mutation increases red blood cell production in the bone marrow. With too many red blood cells, my blood is thicker than it should be. This increases my risk of heart attack, stroke, and blood clots. There is also a slight chance my PV could morph into another more serious cancer called myelofibrosis or leukemia. However, it was reassuring to learn I would likely die with PV rather than from it.
Even though there is no cure for PV, there are a number of treatment options to manage and improve the multitude of symptoms: itching, fatigue, bone pain, night sweats, and headaches. Treatments include phlebotomies, baby aspirin, and three main medications. I consulted both my hematologist and MPN specialist on what would be my best route for treatment. Thankfully, through medication, my blood levels are usually at a normal range. I do have some side effects from the medicine, but in the scheme of things, they are minimal.
Initially, I had a moderate obsession with diet recommendations (i.e. avoid iron-rich foods like spinach) to lower my blood levels. I realized later, just eating a nutritious diet and regularly exercising helps tremendously with symptom burden and assists with overall health as well.
Learning about myself
What have I learned about myself? To start with, I realized I’m stronger than I ever expected I would be. In addition, I found out there were other paths to go down instead of the one I planned. I learned stressing out about every abnormal result or other things I can't control is counterproductive. So instead, I laugh frequently and try not to take myself too seriously. Finally, I live life to the fullest and enjoy each and every day.
How do you feel about your support system?