Published on June 21, 2019
It was Monday of Thanksgiving week in 2016. My wife Kara gave me a wrapped gift in a Banana Republic box, and I thought it was something she got me for my promotion a few months earlier like a scarf or a tie, but to my shock it was a positive pregnancy test.
This is obviously one of the happiest moments of my life, but this event is even more significant, because we lost a baby about two years prior when Kara was 5 months pregnant, which was devastating for us. So, it took time and incredible courage and strength from Kara for us to get comfortable with the idea of trying to have another child. That day was absolute happiness. I was so elated that I had forgotten I had a follow-up appointment with a hematologist oncologist in two days.
To rewind a bit, a few months before this beautiful moment, my red blood counts and platelets were flagged as high from a routine physical, and the recommendation was to monitor for a year or follow up with a hematologist oncologist. With some prodding from my wife and my dad, I had the follow-up appointment in September, and he tested me for leukemia and a bone marrow mutation. He said it would probably be nothing but to check it out anyway. Which I agreed, after all I did not have symptoms. I felt fine and was totally confident nothing would come of it.
Fast-forward back to the day before Thanksgiving. I went to the follow-up appointment to get the results of the test. I kept trying to get my results over the phone for over a month because, clearly, nothing was wrong with me, but they wouldn’t give it to me, so I ultimately had to go in. I even went to the appointment alone, because Kara and I were both confident that nothing was wrong
I remember sitting in the exam room waiting for the doctor and still my mind was so focused on the baby to come. Actually, the gynecologist that we would be seeing was literally right next door, so all of my mental attention was on that.
That all changed when the doctor walked in. I could just tell…just by his look. There was something about it, kind of somber, almost business-like in nature. He started off with the “good news” that I didn’t have leukemia, but I tested positive for the JAK2 mutation and I had something called polycythemia vera - sounded like a foreign language to me.
He didn’t over explain it. He said, “Your bone marrow is making too much blood. We can start to manage it through phlebotomies (what is that?) and I’d like to do one today.” I remember staring at the ground for a moment. My temperature started to rise, the documents he had in front of me went blurry, and then I asked a few questions about the potential of it going away. The doctor recommended a second opinion perhaps before getting the phlebotomy and I agreed.
And so, I left. I sat in the car for what seemed like 10 minutes before I moved, and then I did the worst thing you could possibly do, and that’s Google PV. In popped a million thoughts going through my head as I read what was out there, leaving me with a million questions:
What is this? 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?
My wife and I went from both ends of the spectrum with our emotions that week from finding out we were pregnant to getting diagnosed with PV three days later.
In that moment of being diagnosed, I felt so isolated and really confused. As I did more research, I came to know how rare of a disease it was and, on top of that, how rare it was to be diagnosed at my age.
I felt so alone.
There are 12 to 15 symptoms associated with the disease, and I have experienced all of them in some degree, but the greatest symptom burden for me is mentally.
For the first year, all I thought about on the train ride to work, at work, train ride back home from work or in bed at night was when was I going to die. I would constantly picture my kids’ life moments without me being there, Kara looking glim and sad because I wasn’t there; weddings, graduations, all of it, and it gave me anxiety.
One weekend at home, I was experiencing chest pains that were gradually getting more severe for about two days. It felt like a constant squeezing of my heart. Finally, that Sunday at halftime of the 4 o’clock football game, I went to the emergency room, because at that point I thought I was having a heart attack. I remember feeling so deflated, because I concluded that on top of the blood cancer diagnosis, I now have heart problems too. I remember thinking well this is it, this what God has planned for my life.
The doctor was reassuring that it was most likely anxiety but to be thorough they recommended seeing a cardiologist, which I did. I did a full work-up, and my heart was great shape. I still experience anxiety pains every so often, not as severe as that first time and take medication to manage it. Now, I think of my mental battle as a boxing match - me on one side and PV on the other. And that first year, I lost a lot of boxing matches.
At a certain point, I started to feel more comfortable with my diagnosis. My focus shifted and I have to 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.” I wasn’t going to let anything, let alone this disease, dictate my life and how long I’m going to live. I used to be someone who sort of let life happen so to speak. But not anymore. I started to cherish life’s moments more.
A big part of what I wanted to do was raise awareness and become a patient advocate. Today, I attend conferences to meet people with my disease, talk to doctors and become as educated as I can be. Last December, I attended one at Cornell where there were over 150 attendees...150 other people who have an MPN.
Additionally, I’ve participated on a panel discussion with Patient Power, and a wonderful documentary, which absolutely raised awareness but was also so therapeutic for me and my family. I also participated in a “1 Moment a Day” initiative that highlights life moments of people living with an MPN and will be shared on social media to help raise awareness. I’ve become a patient advocate with The Leukemia & Lymphoma Society (LLS) by mentoring newly diagnosed patients and have attended local events courtesy of Incyte and Voices of MPN.
I know this is a lifelong fight. With the love and support of my wife Kara, my two sons Nicholas and Jake (who is now 13 months old and such a blessing for us), my three brothers and very loving parents and in-laws, I am now winning more boxing matches than I am losing.
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