My New Normal or The Story of How the Fuck This Happened

In just 36 hours I went from being a normal, healthy, handsome, super popular, wonderful  smelling, heart-breaking hero to all whose radiantly charismatic force of physical, social and sexual dominance and divine glory couldn’t be eclipsed by Paul Rudd himself to learning that I would spend the next 5-6 weeks of my life (and years beyond) as a consensual prisoner in a blood cancer treatment center, whose only function is to be bareback raped by chemicals designed to destroy everything they touch. How the fuck did that happen??

Tuesday night (1/20/15) I cooked a healthy as fuck (fucking is one of the healthier things a person can do) dinner for Liana and me to eat while we ironically sang along with the sarcastic  “Thanks Obama!” chorus sung by the Middle American Overcompensatingly Closeted Gay Men’s Choir (I’m talking about the State of the Union address, and not sorry for getting political here. Deal with it.) We had a few glasses of wine, Liana went home to rest up for the day of work, and I went to bed at the old man hour of 10pm. It was an extraordinarily ordinary night with the normal amount of normality that you would expect to expect, but it was the last normal night I would ever have… Or, rather, my concept of “normal” was about to change.

A few hours later, I woke with an untamable fever and a red-hot, coal-pooping scorpion in the back of my throat. I was shivering so much from the fever that I elected to stay in bed and allow the poisonous arachnid to shit fire onto my tonsils. When day broke, after not being able to fall back to sleep at all, I called my doctor as soon as her office opened. I assumed I had strep and the control freak in me wanted to get anti-B’s right away in order to efficiently return to normal. I went in later that morning and my doctor (whom I love, by the way) wrote me a prescription. Totally normal.


Line break to inform you that I was just administered conscious-altering drugs. Let’s see how the rest of this post goes! … Proofreading editor comments are encouraged


While I was being examined, I figured I would casually mention the unexplained (and non-painful) bruises that have been popping up on my skin over the last week and the singular nosebleed of my entire 30-year lifespan, which simultaneously happened 4 days earlier. She looked more concerned than normal and decided to do a blood test. I went home and spent a bunch of money on soup, juice, medicine, popsicles and other things that I normally use to deal with an illness. I lounged on the couch and recovered for the rest of the day and then went to sleep. The next day (1/22/15) I felt marginally back to normal, so I began to ready myself for work.

I put one leg into my pants and then answered the phone. My doctor told me to drop everything I was doing and check myself into the ER immediately. They would be expecting me. I put my other leg into my pants and took my first step into my new normal life.

After packing exactly as I would for a 3-hour flight (small bag with books, laptop, charger, iPhone) and then adding a handful of unread insurance papers that I assumed were important, I got into Liana’s car and headed toward the hospital. Ruby (Liana’s dog) knew way more than we did at the time, because she was shivering non-stop in my lap. She felt the shift in the normal happening.

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Ruby Stella Makalani Orenstein, aka Dummy Bear, Bug Bite, Sweet Meats

I said goodbye to Ruby, not knowing that it would be the last time I saw her for probably close to 40 days. I said an abnormal goodbye to Liana, and wearily stepped into the hospital without noticing how the fresh air and sunlight felt.

Of course I went into the wrong entrance and spent 20 minutes figuring out where I was supposed to be. I was held in triage for a few hours as a few doctors casually mentioned that a room was being made for me in the Colorado Blood Cancer Institute wing of the hospital. It was the first I’d heard of all of it, especially the part about having a room made for me… Oh, and even more importantly: BLOOD CANCER.

I made it to my room and was stuck with more tubes and pipes and needles than information. The tubes, pipes and sticks were going to give us the info – well, that coupled with a moderate dose of waiting around. The L word was mentioned several times; the C word came up as well. Those were the only ones I heard as I bent over for my next round of pelvic bone marrow extraction. In a sedated stupor I asked to see the sample that was removed from my assbone… It was literally the size of a match stick. I believe it was the fentanyl that made me shout “HOLY SHIT.”

After enough poking, cutting, shoving, sticking, prodding and waiting had been done, my mysterious doctors came in (noon 1/23/15) and robotically crop dusted their results onto me: I was told that I have Acute Lymphocytic Leukemia, a pediatric form of cancer.

There must be some mistake because I’m super mature, you boners. But really, it usually hits children and is almost completely treatable. It’s a bit less treatable in bigger kids like myself, but the recovery rate is still high enough to warrant my aggressive display of confidence and swagger.

Then the logistics came at me. I could not leave this unit of the hospital for a month. No outside food, limited physical contact with visitors – and don’t even think about going to work. Fresh air gone, sunlight gone, activity gone, health gone, comfort gone, “standard of living” a distant memory, privacy… What’s that?

And lastly, control: Forget you ever knew the word.

 


It has been a few days later now (1/25). I’m coming down from my first day of chemo, getting ready to snuggle next to nothing and nobody in bed, be woken up twice through the night to have my vital signs checked, specifically situate pillows to block out the blinking lights of all the medical machines in my room scientifically designed to keep me awake – er, alive. I have to wear a full clean suit just to go out into the hall to get more water for bed and I keep my door cracked a bit because the nurses want to hear any alarms that go off.

This is normal. All of this is completely normal now, and it only took 36 hours. Yeah, I have cancer and whatever, but the change of perspective has been as refreshing as a 500-gallon cooler full of ice dropped on your head from a 10-story building: Immediate, intense, totally life-changing… For better or worse.

I didn’t notice how good the sunshine or the fresh air felt when I walked into the hospital. Now I can’t stop noticing how good it feels when my heart beats, and when my lungs fill up with air. I notice the way water feels when it goes down to my tummy and I notice the way it comes out (into a measuring bucket.) My life is so much simpler in this new normal. The only thing I have to worry about in my life is… My life.

And I’ve never felt so alive.

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9 thoughts on “My New Normal or The Story of How the Fuck This Happened

  1. Pauly January 25, 2015 / 8:21 pm

    “Robotic crop dusting” is the lulz.

    Keep fighting, Jason!

    Like

  2. Kris January 26, 2015 / 2:36 am

    Keep up the good fight. Shoot me a text or facebook message in the near future, I’d love to share some resources for you and the ladyfriend that Ginger and I used a few years back. Tons of support around the Internet for patients and SOs our age. Lucy love to you brah. I’m only a phone call away and always available.

    Like

    • jasonthornyak January 26, 2015 / 2:40 am

      Very much appreciated. I figured you would be a good resource. I will take you up on that when I have some time! Thanks man.

      Like

  3. Anna January 30, 2015 / 8:01 pm

    You’ve never met me in your entire life but just wanted to let you know that I’m sending you good vibes and hoping for a speedy recovery. Thanks for putting things in perspective for me, your blog is bending my mind a bit.

    Like

  4. Blake February 1, 2015 / 5:18 am

    Stumbled here from the Twittersphere… Wish you well and keep up the great writing.

    Like

      • Blake February 1, 2015 / 3:46 pm

        Sure, I spotted it from Mookie Blaylock @asshurtACKFlags

        Like

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