Life is about not knowing, having to change, taking the moment and making the best of it, without knowing whats going to happen next.

The weekend was terrible long. Life is different when you are waiting for decisions to be made for you about your destiny. It is so very different when we as humans can objectively change the path of our lives, but when the outcome is out of your hands, that is the hardest. It is a completely different ball game when the game you are playing is unwavering and relentless.

I wanted to know what my destiny with this disease path would be. I went to the GI doctors office at the Mayo Clinic that Monday first… As I sat in the waiting room to meet with my doctor, I couldn’t imagine what he was going to tell me. All I knew was that it was probably going to be terrible news, and I wasn’t sure how my numb, fragile-self would handle that news. I got called in and sat down to wait for fate-telling #1 for the day. Surprisingly, this was the best news I heard all of that day. He told me that all of my liver and kidney enzymes seemed to have normalized over the few days between the tests. They didn’t understand why, but my liver and other organs were working fine. The worry that was started the previous week from my partially dead spleen, was put to rest. O.K… Now all I had it seemed was one dying organ, a blood clot that hadn’t moved, a choking sensation that wouldn’t go away, and a sore shoulder whenever I would eat. Not too shabby eh? He told me that they would check on the liver enzymes every 3-6 months for the foreseeable future to make sure nothing would change, but for now my organs seemed to be keeping me alive.

Now it was onward to the hematologist. This was the one I was truly worried about. If you have never been to a hematology office, I will explain it to you. Everyone that is in there has a story that is terrible, even if some are trudging through the disease they are facing. It is one of the most terrifying places that I have ever waited because when you are around a bunch of people who are dying, it’s hard to think that you wont. Oh, the people that I talked to while waiting for my appointments here were unbelievable, but up-lifting (for the most part). I sat and discussed life with people that were terminally ill from things that should have killed them 40 years ago that were still standing strong because of the information they had received at the clinic. They all were grateful, and I wanted to earn a life like that. I wanted to be just like these people, and live like I was dying, but not be dying. Unfortunately that is not a decision any of us can make in life, sometimes our bodies just give up, but seeing these warriors gave me hope that no matter what happened, I could live a semi-normal life.

I was called into the office, and my doctor looked so very puzzled and sad. Very stressed he said, “Mr. Negro I am so sorry to tell you this, but I have discussed with all of my colleagues here and at John Hopkins, and we just don’t know what to do…”. He told me that no hematologist had ever found a case like mine. I was an anomaly to the clinic and John Hopkins… Think about that! There is no reason that I should have the second chance that it appeared I was getting. I have a large spleen indicative of late stage cancer, a blood clot that would never move, organs that seem to be failing and a bunch of other issues, but certain tests wouldn’t line up. There was no clear treatment plan they wanted to start me on besides the Eliquis at this point. All of the discussions of chemo therapy happened though then and there. He told me that my case was presented to a giant group of scientists and no one had a finite answer if starting anything else (more aggressive drugs that would kill red blood cells in my body) would improve my prognosis. He was hopeful that my clot would have moved by now in my spleen, it hadn’t. He said now that I have been on thinners and it didn’t dissolve, there wasn’t much hope of it happening in the future. He told me what would happen next, he told me that I would be sent home and seen in three months again, with repeat testing around the board. The things that I learned at the next checkup would change my outlook on life always. But that is for another time… He wasn’t sure how long I would live, how long it would be for me to have another clot. He told me I might not be as lucky next time. He told me I could die tomorrow, or live a normal life. I left that appointment with a huge sense of anxiety, even though it appeared the anomaly in my blood was letting me live a little while longer.

Be the type of energy that no matter where you go, you always add value to the spaces and lives around you.

If you’ve gone through the things that I have, and I by no means will ever claim to have the hardest life, you realize that all you can do when you see death, is be relentless and unwavering back. I am very blessed to have had a blood clot! Many people can’t believe it when I say it, but it woke me up to the things that truly mattered in life. I am happy to know how it feels to be truly dying, and I am happy that I see every single day as a gift. I will always treat people around me with kindness, I want to be a positive change in the world. I want to continue sharing this message throughout my life and the feedback that I have been getting from these writings have told me that I will probably get to do that. I realized during this stage of my life, that I better start beating death by living soon, or when my heart stopped beating someday it would be just a formality. I started this website, this mission, because of my journey. I want to accomplish the things in my life that I planned. I want to help people who are going through these medical hardships, people need people to survive. This is a movement and I hope I am talking to someone out there through my words. Sometimes it feels like I am just shouting to no one.

Until next time ACJ family. I appreciate getting the chance to tell you my story, I thought this dream would never come true.

Peace, love, and all of the above.

Love, Alex (Your clotted friend)

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

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