I came back from a 200-mile bike ride. I noticed that I was really starting to get a lot more fatigued on my rides. So, the signs were there. And I went to see my regular PCP for my annual checkup, and he called and he said, “Well, something’s wrong with your platelets. I think you need to come back and do another blood test in a couple of weeks.”

My platelets were still really high and then they did the test for JAK2. I might not have known that I had PV for a really long time, because I was what I thought was pretty healthy. I had to kind of figure out, “what does this really mean?” And when the term “a chronic illness” or “blood cancer” was thrown around, I was a little angry.

You do have to face the fear: “Am I gonna see my kids grow up? Am I going to be able to do the things that I love? What’s that gonna look like?” PV may be manageable, it may be treatable, but I’m going to live with this for the rest of my life.

A lot of times I would hide that I was tired. I didn’t want my family to have to, like, worry about me. You know, as a caretaker, you’re always worried about everybody else. I decided to retire because I looked at my blood work after working all those hours and all the stress. But I decided, you know what, if I want to live a good life, it’s still very manageable and I can still do many of the things that I love to do.

One of my hobbies is traveling. I’m going to continue to travel. And I just have to plan ahead.

The fatigue is a different type of fatigue than when you don’t get eight hours of sleep. You get out of bed first thing in the morning, you start doing your daily routine, and you’re so fatigued that you can’t function. Sometimes I felt like my heart was pounding out of my chest, and it does affect you. Sometimes I’d stand at the bottom of the steps and just look up and say, “oh man, I’m so tired.” It affects you mentally. Also, you get a little bit of brain fog.

PV is a disease that you make too many red blood cells. When you get a milkshake and it’s really thick and you’re trying to drink out of a straw, you have to work really hard to drink out of the straw. That’s what it feels like to me sometimes at night, like my body just can’t process all those red blood cells.

I still kind of have the insomnia and I was having a lot of, also, like, numbness and tingling in the feet, but my main symptoms were definitely the fatigue and the itchy skin. The itchiness that accompanies PV is a lot different than regular itchiness. I would come out of the shower and I would literally want to just scrape the skin off my bones.

Some mornings I get up and I’m ready to roll. Other mornings, I’m tired, my body hurts, my body aches. With any type of a cancer journey, you will stumble and you will have to decide to move forward. You really need a good team, and you have to be willing to speak up. By speaking up to your care team, it helps with your everyday life decisions. But you have to find out what works for you. And on the days you feel good, go out, go out and do the things you love. I mean, that’s life. You have to learn to enjoy your life.

I just keep putting one foot in front of the other and just saying I’m going for it. There’s too many things I have on my list that I want to do.