Out of all the prodding, poking, tripping and falling over my own IV chord, peeing and pooping in plastic containers, bruising, paper cuts from too much mail (humblebrag like whoa), needle stabbing, vein threading, flashburing my insides with napalm chemicals, bone sample slicing, spinal tapping, tears of pain and the ultimate battle to decide true existential worth (or lack thereof) fought by Kierkegaard and Nietzsche’s at the Bridge of Khazad-dûm….
Among blood clots, bed sores and other physical ailments caused by sedentary life in the oncology ward there is another, even more dangerous enemy: Cabin Fever. The doctors want us to keep on our feet as much as we can because being physically healthy is a healthy idea when you are already unhealthy and blah blah blah ugggghhh shut up I’m not listening. My doctor threatened to light a few matches under my shoe earlier today if I didn’t make an effort to get some hallway time (similarly to when we throw a racket ball down my apartment hallway for Dumb Dumb Ruby to chase). We’re supposed to walk three miles a day, the hallway of the oncology unit is 28 laps to a mile, and the hallway looks like this:
28 x 3 x that= NERP
Compare that close-out WalGreens aisle to the sexual vibrancy of color, light and magic that exists within the confines of my Studio 54 Quarantania:
DEAL WITH IT
There is a clear winner when it comes to inviting atmospheres, and it surely isn’t the neutered network of fluorescent vas deferen outside my door. I tried to convince my doctors and RNs that I get plenty of exercise by bouncing my legs along to the sweet jams I be pumpin’ in here all day long but they still insist upon the fact that I leave my room and exercise my dumb body, despite the fact that I’ve been spending 30 years purposely punishing it.
I decided, regardless, to be a good little patient tonight and venture out into the vapid hallway… but on MY terms. I wasn’t just going to walk up and down the hallways like your local mall’s Bitchin Blue-Hair Betty Brigade… No, I WAS GOING ON AN ADVENTURE.
One of the hardest things about having the immune system of a kitten born prematurely with unrelenting feline AIDS is the lack of human contact. My chart says that I am “profoundly neutropenic,” which means that my white blood cell count is lower than snake piss (as we used to say in Upstate NY.) An errant fart could kill me at the moment, so everyone who enters my hospital suite has to wear a mask, gloves and a really stylish yellow gown made out of low-grade paper towels. My doctors and nurses handle me constantly, so I do have SOME contact, but that’s obviously not what I’m talking about. This is about being around my girlfriend.
To put it bluntly, my current physicality with Liana is about as fulfilling as a Mormon safe sex pamphlet. Ever since we’ve been separated by sterile barriers, I’ve realized how much I’ve taken for granted… There have been no hello kisses, no hand holdings, no skin-on-skin snuggles, no hair smellings (keeping this rated G, you PERVS.) The last feeling I had before falling asleep every night used to be her lips against mine, or at the very least a stray hand that fumbled toward me in the dark to maintain a symbolic contact. Continue reading Our Chemo Romance
Today marks one week of living in my temporary hospital home. It honestly feels like I just got here because I’ve been so damn busy. Would it surprise you to know that I haven’t watched a single minute of visual media (other than the morning news while I drink my coffee and eat my 8 pieces of bacon— shut up, my oncologist told me to eat whatever the hell I want: DOCTOR’S ORDERS) or read a single sentence of leisure reading? I’ve been sitting in this 200 square foot room for an entire week with no “work” to do and haven’t been bored once. I’m as astounded as you are considering that I can’t sit around my apartment between 5-10pm with out going a bit stir crazy every weekday. I suppose the blog and the hourly circulatory system rapings help pass the time… but still.
I guess I should be counting my blessings that this isn’t some sort of brain cancer that robs me of my ability to focus, if such a thing even exists. One full week of total mental stimulation and productivity, one full week of new and exciting (for better or worse) experiences, one full week of thoughts and emotions that I ignorantly never expected to have.
Today was actually the first day that I felt less than stellar physically. I was warned that this would happen and I’m prepared for it. At the risk of sounding pretentious or full of myself, the brave face that I’ve put on is absolutely genuine and is not a happy clown mask hiding a sad clown face… but I would be lying if I weren’t without my moments of fear, doubt and vulnerability this week. This blog has been light and positive, funny and uplifting, but it has always had the intention of being a an unfractured reflection of my true experience with this life changing kick in the dick.
I’m up all night to get blood
I’m up all night to get some
I’m up all night for nurse fun
We’re up all night to get #LEUCKY
The night between the 26th and 27th, my night nurse came in to check my vitals at midnight. I had taken my nightly Ambien (totally necessary to sleep while roiding out on Prednisone) so I was toeing the line of consciousness that exists only if you’ve forced yourself to stay awake for longer than 48 straight hours. I’m talking total misunderstanding of your own ego, the point where you aren’t sure if you are in a dream or if you ever even knew what a dream was to begin with.
I am a prissy little boy and need to shower at least once a day lest I skeev myself out by my own greasy hair. It gets oily, clumpy and grossly unmanageable if I don’t make every effort to fight nature’s cruel desire to make me look like an unkempt homeless person. This is ideally how I like my hair to look:
I’m sure many of you have wondered where I was able to find the motivation to adopt and maintain the – how should I put it – chipper as fuck attitude about a life-threatening cancer diagnosis. I’ve been asking myself the same thing and it didn’t take me long to realize where came from: my father’s example.
My dad, Robert “Bob” Hornyak, died almost exactly a year ago from ALS. If the massive self-inflicted waterboarding campaign for ALS didn’t educate you enough, ALS is a degenerative nerve disease that basically shuts down your brain’s ability to communicate with your body. Essentially you slowly lose the ability to control the movements and functions of your body, both voluntary and involuntary. Eventually your mind becomes a solitary confinement prisoner in the deepest cell of your body’s dungeon where nobody can hear you scream.
This is the title card from an old HBO show, if you aren’t culturally savvy.
I want to get #Leucky to trend amongst the cancer community.
Definition: The full spectrum of of luck, from good to bad, that is brought on by having Leukemia.
Obviously it’s easy to see the bad luck that the disease can bring to a person. Ex: “welp, all my eyelashes fell into my cereal this morning, #leucky me!” or “My blood platelet count is lower than my IQ, it’s my #leucky day!”
But to be honest with you, I’ve been using it in a much more positive light, because if you’ve been reading my blog you may have noticed that I have fetishized the disease into a demented positivity. Every time I read through the comments on my donation page I feel like the #lueckiest man alive. When a nurse tells me that my energy has elevated the mood of the entire cancer ward I realize how #leucky I am to be able to help other people just by being myself. When my girlfriend goes way out of her way to make me feel loved despite my #unleucky circumstances, I know that I #leucked out big time.
Everybody who knows me would describe me as a tightly wound anxious control freak. I used to wear this as a badge of honor, citing it as the example why most of our social endeavours end up working out so well. Somebody has to take charge sometimes to plan and organize things or else events will just devolve into people randomly walking into each other and losing their ability to speak English.
I’ve never been a “go with the flow” type. I don’t believe in the phrase. When water initially flows down a piece of land, physics and gravity guide it into a channel. It isn’t just a random karmic movement of flowing molecules… they are governed by real laws of science until they find the best possible channel down which to flow. I am a type of person that goes out and looks for that channel, and if it doesn’t exist… I dig it. It’s proactive pragmatic situation control… it works wonders in many disciplines of the world.
