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Patient InsiderHi, I'mDebIf you have PV,you have options.

Life-altering lab results

Ten years ago, when I was 54, I went in for a routine annual physical exam with my primary care provider. We did some lab work, and the results showed that my platelet count, white blood cell count, and red blood cell count were all high. Concerned about my results, my doctor referred me to a hematologist.

The hematologist did some additional blood work, including a test for the JAK-2 gene mutation. I had it. My diagnosis of polycythemia vera (PV) was confirmed.

You can always ask what your options are.

Taking charge of my treatment

Looking back on it now, I probably did have some early signs of PV – I just didn’t know it. I had three young kids, I was in the Army, and I was getting up every morning and running before work. By midday, I’d be fighting to stay awake, and then after work came activities. I often felt fatigued, but I just assumed it was because of my busy life.

My PV diagnosis helped me realize that these were not just the effects of a hectic lifestyle. But it was only when I started seeing an oncologist that I realized what my condition really was. As he was telling me I couldn’t take certain medications because of my blood clot risk from “the cancer you have,” it finally dawned on me. It was the first time a doctor had used the word “cancer” to describe what I was dealing with.

My approach to getting the treatment I needed changed after that. I started doing my own research and coming prepared to appointments with what I’d learned. I made lists of questions for my doctors. I even started to attend conferences to keep up to date on the latest treatment options.

I also had to get comfortable asserting myself; if I read about something new that I was interested in, I made sure to ask, “Can I try this?” It’s always good to ask what your options are, even if there’s already a first-line treatment. By exploring my options and taking charge of my PV journey, navigating these treatment discussions became almost second nature to me.

Even if you have to slow down, keep going forward.

Embracing my new normal

Receiving a rare diagnosis initially felt very isolating. But as I looked for my new normal, many things became therapeutic. Reaching out for support on social media helped me see that there was a whole community out there of people navigating similar challenges. As I’ve attended more conferences and spoken out about life with PV, I’ve met even more of us. Support doesn’t just come from fellow patients, either. Finding a doctor you feel comfortable with and who supports you in your journey can be a big help.

Through it all, writing has been my most reliable coping tool, whether I’m journaling, sharing my story with others, or working on a novel. I write songs and perform music, too (I even have a song about cancer!). And while running is no longer for me, I’ve joined a neighborhood walking group so I can still get my steps in. I’ve learned that even if you have to slow things down a bit and maybe not do as much as you used to, just keep going forward – because doing your best is enough.

My Reading List

PV is rare, but support is out there.

Oh, and follow more of my story.