I see my path, but I don’t know where it leads. Not knowing where I’m going is what inspires me to travel it.

Rosalia de Castro

Time is such an interesting part of life, moving at different speeds it seems depending on what is going on around you. Fast when you are having the time of your life, slow when you are waiting for presents at Christmas, fleeting always. Read that again in your head, fleeting always. No one truly knows what they have until it is taken, until it is ripped from your life, until it is gone. The darkest moments in my life, and any life for that matter, is when time is ripped away from you permanently. You won’t have another time to wait for something, you won’t have moments that will fly by because of how exhilarating they are, it will all just be done. This is what many patients of terminal illnesses have to go through. I was told I had six months to live when they thought I had leukemia. Now I was approaching the two to three-month mark and I was numb.

They had ruled out the leukemia for now, but they found the JAK2 mutation. Pre-death counseling, knowing I had a mutation associated with every blood cancer known to man (almost), stacks of reading to do for school, making time for my family, making time for my girlfriend, making time for my friends, making time to show people I was doing great and living a happy life (obviously a façade), it all was overwhelming. Numbness had overcome my life. I remember thinking, “no one should ever have to feel this way”, and that fed the façade. How do you tell people in your life that you are afraid of the situation you are in without worrying them? As I write this, I am happy with the growth that I have seen in myself and others who have gone through similar scenarios. But it still is very against my personality, especially after all of these events, to ever stress anyone out with the things that were hurting me. I know what it is like to feel hopeless and lifeless, and I don’t want anyone to have that feeling. I wanted to fight it alone, I know it is ridiculous.

I ask not for a lighter burden, but for broader shoulders.

Jewish Proverb

I lived and breathed during that week of waiting in a lull. Living for others mostly. Scared out of my mind every night when I shut my eyes that I may not wake up. Scared a blood clot would take me away from every single thing that I cared about, what I wouldn’t do for peace of mind. A lot of what I would like to write about in life comes from this time in my life, as it taught me the most. I am a thankful person because I have had that chance taken away from me. For some odd reason the situation kept giving me hope and taking it away. Life was holding a treat in front of my face and pulling it away whenever I got close.

At the end of the week, right on time, I got another call from my hematologist. He first told me that my bone marrow pathology results came back. The doctor that looked at these slides had determined that it looked alright, but he thought something was brewing. He wasn’t sure what, but something bad could happen from what they saw. Fan-freaking-tastic. I’m sure you can imagine that this first piece of information thrilled my anxiety levels. The second piece of lovely information he shared with me was the JAK2 mutation was confirmed, and that the allelic ratio was hovering at a low level (which was good news, meaning I wasn’t completely mutated in that area of my genome). I expressed how happy I was to him. He cautioned me repeatedly, “Mr. Negro, you have a large spleen and tests are coming back abnormal, pleased don’t get your hopes too high, this is usually associated with late stage cancer”. At this point I was pretty used to being numb, it didn’t phase my numb happiness as much. He wanted to meet with me and keep doing more tests the following Monday. I would continue taking the Eliquis (what he informed me at this point, indefinitely) throughout the weekend. Once we found more answers we could decide how to control my blood levels to drop the likelihood of more clots, but something still wasn’t making sense. I went into the weekend anxious and exhausted from living that way. Not even food made me feel any better, whenever I ate too much my spleen would make my shoulder hurt from it pushing on my heart. This odd phenomenon, called referred pain, is still to this day a constant reminder of how precious life is. Some days when I feel invincible, all it takes is a little too many bites of something and there it is. For those of you familiar with spleens, the average healthy adult spleen is around 8-12 cm, mine was and is around 24 cm. Being the size of a football, there isn’t much room for it in my gut.

Oh to be in a spot like that. So many questions and so little answers. To me it made me feel like I was putting together an 1,000,000 piece puzzle, oh so frustrating. Just when I was about to figure out the final product, life came and shoved the table holding my puzzle and it all fell on the ground. The only way I can live in this puzzle making analogy is by finishing it. This meeting with my doctor the following week would change my life forever…

Thank you all so much from the bottom of my heart for all of your support!

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