We all die. The goal isn’t to live forever, the goal is to create something that will.

Chuck Palahniuk

Theres something very poetic about knowing that you could die at any moment from a blood clot, something very seizing. The world stood still after finding out I had a mutation that was most likely killing me a little bit every day. I knew in my head and heart that this wasn’t a false positive. I knew that I had an answer. I just never imagined that the answer would leave me with so many questions. There was no way that my case could be so special, I wasn’t special. I had almost given up, this fight seemed too difficult for any human to overcome. I felt more numb than ever. Terrified by the fact that I was harboring my own murderer inside my body. I didn’t even get the honor of walking to the guillotine, my electric chair was in my blood.

Going through the motions the following week, Eliquis became a way of life. This drug would, in the meantime hopefully, keep me safe while my doctors figured more out from all of the tests that they wanted to do. This drug is truly outstanding and I have to say it is one of those miracles of medicine thus far. It gives many of the same benefits that other blood thinners do, with less of the limiting factors. I could still eat whatever I wanted, I could still drink whatever I wanted(which was important after seeing how much this drug costed!), I could still live a semi normal life. Total side note on this topic but this drug is EXPENSIVE, holy-wow I almost crapped myself when the pharmacist handed me a bill for the first time for 400$. What?! Luckily I have been able to get that reduced through a CoPay card but I think we need to see some major change in the pharmaceutical companies in this country. That is ridiculous. I always had seen people in my life suffer through crazy medical expenses like my late grandmothers insulin. The cost was insane, for something people needed to live. She paid, just like I paid. I was willing to pay whatever I needed to, to be here for my family. To be here for my parents who wouldn’t be the same without me. To be here for the people I cared about the most. To be here to help bring a little light into the world. I grew up with the highest aspirations and I still hoped I would get a chance at some of my wishes and dreams.

My doctors still wanted me to do the pre-death counseling, they still wanted my advanced directive, and they still tried to talk me out of my stubborn ways of “I can live through anything”. Gah I was stubborn. I still am very stubborn. Even at my lowest points in this process my brain would think of the “what ifs” that could save me. As I waited for answers, I sent probably a million messages to my hematologist with questions about experimental therapies that could save my life. He always was very straight with me and told me that the therapies Im looking for were being developed, but nothing will be concrete until probably after this kills me. He wanted to be hopeful with me but he didn’t want to lie to me. I hated this tough love but I understood its place, especially after the fact. To this day I am very surprised that this doctor doesn’t hate me because of how stubborn I am to live, I realize how weird that sounds.

So, tests step one, get my bone marrow taken again. I got off of work early one day to go and embrace this lovely procedure once again. Gosh I was uber excited! I met with my dad and we walked to the appointment area, I was so very nervous from the first experience I had. This was surprisingly different… They informed me when I got there, that they would be putting me to sleep for 15 minutes to get what they needed. When they told me that I was the happiest clotted up boy in the world! They didn’t ask me to change or anything, I just went to a room where I was first evaluated by a nurse. They then led me away from my dad and brought me to this table in a secluded room. They pushed a few drugs through an IV to me, and all I remember is talking with the surgeon and then all of a sudden I am sitting fully clothed in the room with my dad. They had taken the bone marrow, the bone biopsy, and I had nothing to do with it. I just took a nap and would be sore for a few days. Not too shabby, I was groggy, but I felt way better than the first time… Would recommend.

Tests step two, get an endoscopy to make sure that I didn’t have any lesions in my esophageal pathway that would be troublesome with this new blood thinner that I was on. Like I said, some of my liver enzymes and things had been off on the first rounds of tests, they wanted to be absolutely sure of what was going on with my organs. They wanted to be sure my liver was safe, my kidneys were safe, my stomach lining was ok, a bunch of things. For this fun process, I had my aunt Diane and cousin Allison come and drive me to the clinic. Gosh I have never been more grateful, for some reason I was even more nervous for this procedure. The techs and nurses got me all prepped and ready for the procedure. They made me sign a few forms making me aware of the risks of shoving a tube down someones throat on a blood thinner, a very light hearted fun reminder from the world of my condition. They started putting things into my IV again and were surprised of how long I was staying awake. I made the joke again (I always make stupid jokes when Im nervous… Or maybe all the time Im not sure), “Ill take a double of that bartender”. The surgeon was antsy I could tell. He told me that since I was still awake I could help put on my mask for the procedure… I don’t remember the mask. Next thing I know, I am in a recovery room feeling very hoarse in the throat and having Sierra Mist shoved down my throat by the nurses. Don’t get me wrong, I love Sierra Mist, but it just was weird waking up to that and having a throat like after a long night of Karaoke in college.

Now I had to wait… About a week. It was the worst time in my life. I wanted to know what they would find out. Was everything I was going through a hoax? Was I going to die in the near future? I didn’t know. No one knew. I won’t make you wait a week… Only a couple days.

No matter what people tell you, words and ideas can change the world

Robin Williams

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