Every great story happened when someone decided not to give up.

Spryte Loriano

Here I am. A young man who had just become a blood clot survivor for the first time. I had absolutely no idea why I was so lucky to live through that, but I couldn’t stop thinking about it. Why was I so lucky when so many aren’t? Ill never know the answer. All I do know, is that it isn’t fair, none of it is. I, like every other creature on this earth deserves a chance to live its novel without any chapters being ripped out. I didn’t know what the next course of action would be. Neither did the doctors at Mayo. The only thing they told me is they wanted to do some genetic testing, but everything was coming back negative.

I kind of forgot about it for the weekend and the next week. Honestly waiting for bad news is like waiting for your own execution. I wish I had known at the time, that worrying truly doesn’t help any situation. I will struggle with that always, I think. I have so many tales for that topic, but we will save that for another time. My family was down in Rochester helping me move into my new first apartment (I never lived in one because I had been an RA for the entire duration of college, except when I was a resident living in one of the halls at NMU)! Yay! I remember the move like it was yesterday, carrying everything I held near and dear to me up to the third floor of a building, mostly by stairs because the elevator was almost more work… Don’t you hate that? In the middle of lifting something out of my stepdads’ trailer, I got another phone call from my hematologist.

Right when I looked at the caller ID my heart dropped from my chest. It was Mayo Clinic, calling me at 7PM at night which is way past business hours (this fact scared me even more). My hematologist came on the phone and said they found something. He wouldn’t tell me over the phone, but he asked if I could come in (yes that late) and talk with him that night, he wanted me to start on a medication.

Medication… Oh no… I didn’t want to not be “normal” … I could write for hours and hours about the effect this had on me (I’m sure you will hear about it more if you follow me long enough), the conflicting cascade of depression that can be caused by it. From waking up one day feeling like a young 20-something ready to take on anything in the world to having every single morsel of the hope for a long life stripped from you. I never thought I had an ego in life until I realized how I was after I lost a huge portion of it. I’ve recovered from this ego loss slightly, but I think a lot of the time when people suffer what I did you never completely return to homeostasis or normal. My ego is definitely more of a façade now. A façade to accomplish what I want to in life and to help other people. I want to make the world a better place because I was here. I truly enjoy making people smile and sharing a spark of happiness every day. Although I don’t connect with him on all of the feelings he had, I truly related to this following quote by Robin Williams (one of my idols):

I think the saddest people always try their hardest to make people happy because they know what it’s like to feel absolutely worthless and they don’t want anyone else to feel like that.

Robin Williams

I experienced the closest thing to what I thought the definition of hell was. I was experiencing it. I never wanted anyone to feel that way if I could have a say. In my head and heart I vowed it and still do to this day. Instead of focusing on myself in my life (not that I only did that before), I was turning my focus to others. It was easier to focus on others.

Anyway! I’m at the hematology office. Waiting in the lobby with my dad and I feel like I am waiting for my death, no joke. The things that were going through my head were unimaginable… How could this be happening to me? Again? The nurse brought us in, and my doctor sat us down and said something like, “Mr. Negro, I am sorry to tell you this, but we found something”. I tested positive (qualitatively) for a mutation in the JAK2 gene, which is and can be associated with almost every blood cancer out there. Its biggest partner though in the cancer business is a disease called Polycythemia Vera (which is an overproduction of red blood cells in the body until it’s too much for the body to handle). He wanted to do confirmatory testing on this genetic finding, meaning it still could be a false positive. Along with that confirmation he wanted to do a quantitative test, to see how much of my DNA had been penetrated with this variant. This brought me the great news of yet another bone marrow test… In the meantime, since the disease I was suspected of having made me prone to clotting, he started me on this outstanding drug called Eliquis… For those of you familiar with blood thinners, this next generation drug is the Cadillac of the industry. So, while I awaited my testing the following week, I was sent home with the knowledge of I had a very large clot in my spleen that could have killed me, and I am prone to it happening again. What happens if I am not as lucky next time? What happens if the next one kills me? What is going on with me? That is a great story for next time.

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