Introduction

I’m very much a family man. I have two young kids, 9 and 5, [and] married to my beautiful wife, Kara, for 13 years. A lot of [my] life is centered around my family and just being there for them.

I love sports. I was a baseball player and basketball player [throughout] college.

I love to help people. Since my diagnosis, I’ve gotten involved in the cause, telling my story, [and] also hear other people’s stories and share perspectives.

What led you to go to a doctor in the first place?

This is really part of the issue with polycythemia vera and MPNs in general. Sometimes the symptoms and what you’re feeling are nondescript [so] you can ignore them. That was very much the case with me.

I wasn’t really feeling too much. I went to a physical, got a full blood workup, and they flagged a few numbers. Even at that point, I didn’t really think I was going to follow up. I was kind of debating it. My wife really pushed me to follow up and that started the ball rolling [for] the diagnosis.

I can’t really point to one thing in particular [that] I was feeling. Now, having the benefit of understanding what the disease is and what the symptoms are, I could point to points over the last 10 years and even going back 20 years where I probably felt some symptoms and just ignored them.

What were some of your polycythemia vera symptoms?

Blurry vision and headaches — [those are] big ones I experienced throughout my life. I remember being at the dinner table, eating Sunday meatballs with my family, and just sort of going blank, thinking that I just needed two minutes. Hopefully, no one asks me a question or engages me in a conversation.

Itching for sure. Fatigue. I’ve learned how to pinpoint what’s just kid fatigue and what’s polycythemia vera fatigue. There’s a big difference in that. I’ve learned that over the years.

It’s the total body [fatigue]. It really prevents you [from being] able to function, which sounds crazy. People say, “I’m tired,” all the time but it is total body fatigue where your body is shutting down and saying, “I can’t go anymore and if you try and push me, I’m going to just get worse.”

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Was there any urgency in seeing the doctor?

I put it off for a little while but Kara was like, “No, you should get a checkup. We’re getting older and you should really follow through with it.”

They said, “Your hematocrits and your platelets are high.” Again, another aspect of polycythemia vera and MPNs that are nondescript is that hematocrits and platelets can fluctuate. If you’re [at] high altitude, your numbers can rise.

They gave me the option. They said, “You could follow up immediately or follow up in a year.” Kara was like, “What do you have to lose, right? Just follow up and see what the result is.”

I followed up and they flagged the numbers. They brought me in to have a discussion. Then from there, I went to Cornell and had a bone marrow biopsy to confirm it.

How did you break the news to your family?

I specifically remember where I parked in the parking lot. I monotonously walked to my car [and] spent about 15 minutes [inside]. All these questions flooded in, questions that I should have asked the doctor. The top one was, “How?”

How did I acquire this? Was it something I ate? Was it alcohol? How long am I going to live? Then you start doing the worst thing that you could possibly do, which is Google. 

I called my brother, [who’s] a dentist, and asked, “What is this? You know what this is?” He said, “No, but I’m going to find out.”

I went home and told Kara. I remember she was in the front room playing with Nicholas at the time and we just stared at each other.

It was just a confusing name — polycythemia vera. It’s a confusing moment. That’s the only word that I could really use. I didn’t know how I got it. I didn’t know what the long-term prognosis was. It was just a very confusing time.

What were the next steps for you and Kara?

We wanted a second opinion so we [went] to Cornell. That doctor was really great and really [broke] it down, explaining exactly what it was and how it would evolve.

I don’t know if that put us at ease. Walking into Cornell and seeing people that are just a lot further along than I was or had different types of blood cancer, I had to leave the room. I got really, really emotional.

How did you manage your way through the polycythemia vera diagnosis?

I don’t think I managed very well. I internalized everything.

I started to recognize the symptoms more so not only was I dealing with some mental health issues, depression, and anxiety, but also I started to recognize the symptoms.

I really struggled with communicating. How am I supposed to tell Kara I’m tired or I’m itching or I have bone pain or I have blurry vision? I felt like I would be looked at like I’m a complainer.

I internalized everything and it ate at me. It even affected my personality.

It changed me. It’s not supposed to be that way, but life doesn’t always work out perfectly. There [are] so many quotes out there that say, “It’s [not] how you get knocked down, but it’s how you get back up.”

It’s tough to realize that [at] that moment. Some people can, some people take a while. It took a while for me to realize that.

How did you deal with all-consuming thoughts?

I would say it took maybe a year plus. I relate it back to being on the Voices of MPN website, signing up for the patient advocacy group the CHAMPNs, and then getting a call from someone I didn’t know about telling my story.

telling my story [to] someone I didn’t know was such a freeing experience. It made it okay to get it out and tell people how I was really feeling. 

It was that particular moment, a year in, [when] I shared my story for the first time [with] someone and that was the jumping-off point where I loved how that felt. It was a freeing feeling and I wanted to continue to do that. That’s what led to the documentary that we filmed, which was life-changing.

No one has to film a documentary. No one has to sign up for a CHAMPN. You can just communicate [with] your significant other or family member and that’s it. That’s doing a world of good, just communicating.

Living with polycythemia vera (PV)

What people see vs. what you’re actually feeling

A lot of patients look great, but they get beat down by the symptoms. Every single day, very severe. That has an effect on your mental state and your ability to deal with it. But it doesn’t necessarily come through in the physical appearance.

A lot of times, we get dismissed so that’s why I make it a point to talk about it often [with] my doctor. We talk about how I’m feeling. I don’t know what is relevant and what is not. I’ve learned that but I give him everything.

I’ve had an experience prior to this current doctor where I was dismissed. I was viewed as a complainer. I have an experience now where that’s the complete opposite, where we actually have a dialogue about that.

How does polycythemia vera affect daily life?

I would talk about fatigue and itching. One time, he says, “Well, you have kids, right? And you work?” I’m like, “Yeah, but doctor, this is different. This feels different.” [He] was just writing it down and moving on to the numbers.

PV is so much more than the numbers. If you’re going in there having a conversation with your doctor about just numbers, then that’s the wrong conversation.

[The doctor] described the fact that it would be a long-term disease and that didn’t put me at ease. That meant I would have to deal with this for the rest of my life potentially.

He talked about the fact that this is a [slowly] progressing disease. I didn’t want to hear that. I hear, “If I have it at a young age, that gives me more time to progress earlier than someone who is diagnosed a little bit later in life.”

He talked about the randomness of the symptoms. They may pop up when your numbers are high, but they may pop up when they’re not. You may get a whole bunch of symptoms. You may get a few symptoms. They may be severe. They may not be.

It was almost like from that point, I was hanging by every day. What’s going to happen today? What’s going to happen tomorrow? Am I going to progress tomorrow? Are my symptoms going to be bad? Are they going to be low? It was just consuming.

Treatment for polycythemia vera

The exciting thing is that there’s been a lot of advancement in treatment options for polycythemia vera.

When I was diagnosed, it was a wait-and-see approach. Baby aspirin and phlebotomies every so often.

Phlebotomies can be taxing. My iron levels really dropped. I got into the habit of chewing a lot of ice and that’s directly related to iron levels and anemia. I would empty the fridge, literally, and just chew ice all day. It was really a wait-and-see approach.

I remember when I got to the doctor that I have now and we talked about drugs that are on the horizon. We talked about being a patient advocate or being an advocate for yourself in treatment. I would suggest doing research on what’s out there currently but also what’s to come and really having a conversation with your doctor.

We got to talking about a potential drug that is now FDA-approved that could be a more proactive approach to your treatment options. That’s the drug that I’m on now, Besremi. That also is supposed to slow progression, which was something that I was extremely worried about and a lot of PV patients are, too.

There are a lot more options now, front-line options, with PV than there ever were before.

How is being on Besremi different compared to previous treatment options?

Sometimes I’d go months without a phlebotomy and then all of a sudden, I’d have to go every two weeks again. That’s the frustrating part because you can take that and overreact to it.

I equate polycythemia vera and MPNs to a baseball season and even a basketball season. A basketball season is 82 games. It’s long. You can’t overreact to any one game or one day, one loss or one win. You have to look at it as a whole and really be in it for the long term. It would be every two weeks, every three weeks.

Now, I inject every other week and my symptoms have gone away for the most part. I’m not chewing ice anymore. I feel a lot better. I have a lot more energy. I’m in a good place.

Importance of seeing an MPN specialist

One thing related to this, and what I would leave people with, is that there is a support system out there beyond family and friends. The MPN community is small, but it’s growing and there are people that are willing to help.

Through that community and the people I met, I got to know other doctors. I did my research and settled [on] one doctor in particular [who] really spent the time getting to know me beyond the numbers.

Dr. Heaney, who has recently passed, dedicated his life to helping people. I’m so appreciative [of] having known him for the three years that I did. He’s going to leave a big hole in the MPN community. I love Dr. Heaney. May he rest in peace.

I’m in between doctors right now. I see the difference right away where the current doctor doesn’t understand everything that goes into how we feel, the numbers, understanding of the drugs, and tweaking the drug. Higher doses, lower doses, what the impact might be, the drugs to come, new ways, even holistic ways, to deal with certain symptoms.

That completeness that Dr. Heaney and other MPN experts have is lacking right now. I’m in the process of looking for a new doctor in the same way that I found Dr. Heaney.