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MPN Patient Stories: What I’ve Learned Since My Diagnosis

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Published on October 1, 2020

There is no doubt that being diagnosed with a chronic disease like myeloproliferative neoplasms (MPNs) can be an overwhelming and confusing experience. However, you don’t have to face this alone! Two MPN patient advocates are here to share their personal stories of how and when they were diagnosed, what their honest reactions were, and what they have learned about living with an MPN since that time. 

David Denny shares how being diagnosed with myelofibrosis (MF) has changed his outlook on life, and Nick Napolitano speaks about his unexpected polycythemia vera (PV) diagnosis and offers advice for fellow patients.

Nick Napolitano’s Story

An Unexpected Turn

One of the happiest moments of my life will always be linked to one of the most frightening. I remember it vividly. It was the Monday of Thanksgiving week in 2016. My wife, Kara, handed me a gift-wrapped in a Banana Republic box. My first thought was that it was a scarf or other present to celebrate a promotion I had received a few months earlier. It wasn’t. To my shock, it was a positive pregnancy test.

This was one of the happiest moments of my life; and the event was even more significant because we had lost a baby two years prior when Kara was five months pregnant. We were devastated. It took a period of time after that loss, plus incredible courage and strength from Kara, for us to get comfortable with the idea of trying to have another child. So that day was an absolute joy. In fact, I was so elated about our pregnancy that I forgot I had a follow-up appointment with a hematologist-oncologist later that week.

Two days later, the day before Thanksgiving, I was sitting in the exam room waiting for the doctor, but my mind was still focused on the baby to come. In fact, the gynecologist that we would be seeing was literally right next door, so all of my attention was on that. But everything changed when the doctor walked in. I could tell, just by the look on his face. That day, I heard the term polycythemia vera for the first time. I also learned that I had it.

Diagnosed with Polycythemia Vera

The rest of the conversation was a blur. I sat in my car after the appointment and had a million thoughts going through my head — thoughts about my condition, my children, my symptoms. I don’t understand what this is. How did I get this? Do I really have cancer? How long am I going to live? Am I going to have to get chemo? Did I pass this on to my children? How am I going to tell Kara and my family?

We went from both ends of the spectrum with our emotions that week from finding out we were pregnant to getting diagnosed with a blood cancer three days later. I was consumed by my own thoughts — on the train ride to work, at work, on the train ride home. I wondered, what would Kara and the kids do without me? I began experiencing chest pains. It became so bad one night that I ended up in the emergency room out of fear that something was wrong with my heart, too. It felt like a pressure, a squeezing.

And there was a pressure, but it was one I was putting on myself. After consulting a cardiologist, I found out the chest pains I was feeling were caused by anxiety. My heart was in great shape. But it’s amazing the amount of physical strain this kind of anxiety was able to put on me. That whole first year was a very difficult time for me. For us. I felt alone, sad, defeated.Nick Napolitans MPN Story

Finding a Silver Lining

I knew I had to make a change. And while it took some time — nothing like this happens overnight — I knew I couldn't let those feelings get the better of me. I wouldn’t. My focus shifted and I credit my wife with that. She said, “We have this blood cancer and we need to do everything we can to fight it; and we are also going to do some good with it and try to raise awareness.”

And fight it we have. I attend conferences to become as educated as I can be. I participate in Patient Power panel discussions and fundraising through organizations like the MPN Research Foundation and the Leukemia & Lymphoma Society. I attend local events in my area and have even become a patient advocate, mentoring those who have been recently diagnosed.

After all of this, I can see now that the change in me was gradual but definite. I used to be someone who let life happen around them. But not anymore. I’m able to truly appreciate my life; I’ve renewed my focus on health and fitness, as this is a lifelong battle; and I’m able to cherish all of the positives I have in my life now, big and small. And that’s because there’s a lot of them. Namely, my family, my wife Kara, and now my two beautiful sons. I also have three brothers, loving parents and a supportive extended family. And we’re all fighting this. Together.

By Nick Napolitano

Transcript | MPN Patient Stories: What I’ve Learned Since My Diagnosis

David Denny: I said, "I'm 60 years old and I have a fatal disease. If I want to ride a motorcycle, I will." The nice thing about it is it kind of took the risk out of it. Hey. I've already got a problem. I guess, I might as well ride a motorcycle too. So, that's what I did. I have primary myelofibrosis. The primary means that I did not have any other kind of MPN. The myelofibrosis just means that there is a kind of cancer in my blood, where my blood makes too many cells.

What Was Your Reaction to Your Diagnosis?

Nick Napolitano: You hear the words "You have cancer," and there's a million thoughts that go through your head that just overwhelm you and scare you.

I had just found out my wife and I were pregnant that same week that I had to go in, so my mind was just not on the potential of being diagnosed with cancer. Going in, it hit me with a ton of bricks. It really did. Was I going to be there for life's moments? I started thinking about weddings, high school graduations, my younger son first walking, things of that nature, just not being there. And it was really, really sad, and really just emotional for my wife and I to go through. The very positive news in the beginning of the week, and then literally at the end of the week just have that drop.

How Did Your Perspective on MPNs Change After Diagnosis?

David Denny: Prior to my diagnosis, I would have thought that cancer was like a tumor that was growing and could then potentially become metastatic, that it would spread through other organs and would just cause this terrible growth that would kill you unless you could destroy the tumor before it could kill you.

Nick Napolitano: I put it in a bucket, like certain types of cancer. Breast cancer, lung cancer, stomach cancer, brain cancer, just the severe part of it. I wasn't as read up as I am now. I thought it was a complete death sentence.

David Denny: As a newly diagnosed person, my main problem was not my disease, it was dealing with the effects of grief. The fact that you have this disease and other people don't. "There's a rare disease. Why do I have to get the rare disease? Why couldn't I have won the lottery instead?" And I woke up to the fact that, "What on earth are you worrying about? You didn't know how long you were going to live before you were diagnosed." We don't know what the future holds. The future is completely uncertain for everybody, whether you're diagnosed with cancer or not.

Nick Napolitano: First and foremost, it's not a death sentence. There's much more hope than there's ever been for any type of cancer. I know that I could live with this for a long time. From a hope perspective, I've never been more positive about longevity, and my life, and the things that I will accomplish, and hope to accomplish. This is a mental battle more than anything else because it's a long-term disease. You think about it as a baseball season, you don't get up or down by one win or one loss, it's 162 games in the season, so look at it that way.

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