Everybody Get’s Leucky, the fundraiser that we threw last Saturday, was a complete success. We were able to raise around three thousand dollars for the Leukemia and Lymphoma Society with the help and support of our friends, family, coworkers and community members. The event went off without a hitch and everybody but me was able to get nice and drunk in the name of Cancer. I was also able to make a lot of people who had no idea what was going on pretty uncomfortable with my inappropriate cancer jokes.
I fell down a well a couple weeks ago. It was cold, dark, damp and uncomfortable. Sting wasn’t available to dig me out (obscure Simpson’s reference) so I was left to luck and my own devices to get out. I was limited by the well’s steep walls and my insurmountable physical anemia. People could yell down to me and I could hear their words bounce and echo all around my cylindrical tomb, but it didn’t help the loneliness. One day, to my chagrin, I felt raindrops being sucked into my tiny hole in the world. The rain kept falling and the water started to rise at my feet. At first I was too tired, ill and depressed to do anything but passively float. The water continued to fill the well and lift me up with it. Eventually I couldn’t just float anymore and I had to start treading water. I was an active participate now on my skyward ride to freedom. When I climbed out of the top of the well I saw all of the people in my life who support me were standing around holding buckets and hoses. The sun was out and there wasn’t a cloud in the sky.
That’s my attempt to allegorically explain my uncharacteristic silence over the last few weeks. The first session of my outpatient chemo hit me hard. It took a couple of weeks but my body started to react to the chemical warfare brigade. The regimen is designed to destroy cells that replicate quickly like hair follicles, stomach lining and cancers. This left me with the silky smooth legs of a professional model and the bulimia symptoms of a professional model and the negative body self image of a professional model and the life crushing depression of a professional model. Add to this the debilitating pain in my entire central nervous system as a result of one too many intrathecal chemo injections. For those of you that don’t remember, that’s when they tap my spine and spray chemo drugs inside of it. The headaches became so bad that I couldn’t stand up without experiencing migraine caliber pain.
It was a bad couple of weeks. I spent a lot of time in a fetal position on the couch and a lot of time treating my toilet as kleenex and blowing my runny butt into it with the frequence of a head cold. I couldn’t walk up the stairs without having to lie down once I reached the top to catch my breath, nor could I fry an egg until completion before I had to sit on a stool to recoup. I was physically useless and my limitations started to fester in my brain. I began to get upset with myself and the situation and became grumpy and depressed. I did not want to be down in that well, but I was at the point where I couldn’t get out on my own.
It was a pretty bad time to be down there, too. My life was just starting to get back to normal, which means it was getting busy as hell. In the span of three weeks I moved into our new house, returned to work full time from home, had to plan the Everybody Get’s Leucky fundraiser party and organize the adult sports league that I operate. I was too busy be folded between the cushions of my couch or suctioned to a terlet.
At first I neglected my duties and allowed myself to float along with the rising water. Thankfully Liana was there to help keep my head above water otherwise I probably would have drowned. She had to work twice as hard during our move because I was about as physically useful as overcooked pasta. I’m endlessly thankful that she was there to help me, but also terrified of the payback in the event that she gets pregnant. There will be more pampers than at the diaper factory.
It might have appeared that the water in my allegory was actually the support of my friends and family, but it actually represents something more important and helpful to me: my obligations to them. Sending support down the well would have been dropping pillows and sandwiches to make my stay liveable and slightly more tolerable, but it would have done nothing to get me out.
A person who has no obligation to anything other than himself has no reason to live. We need to be productive to something other than ourselves. This urge governs our desire to reproduce, to be creative, to care for others and to participate in society in general.
This reminds me of one of the scariest experiences I’ve ever had. It happened while I was coming out of my cognitive episode in the hospital in early March. My brain had to relearn the world as the parts of it that had previously checked out during the frontal lobe governed crisis mode turned back on. I remember trying to make sense of where I was and what I was doing. At one point I truly believed that I was dead or at least in a coma in which my consciousness was doomed to live only in my small hospital room. When I tried to test the limits and leave my room, I was told by the nurse that I wasn’t allowed to do so. I asked her what I was supposed to do, and answered “stay here until you get better.”
She had no idea that I was struggling to understand the basic principles of reality at the time, so she didn’t understand that this would make me believe that I was actually in a coma and that the world that she and I were inhabiting was a limited simulacrum of reality. I thought I would live in that eternal loop without the ability to contact the outside world and thus sit there with no purpose for eternity. My subjectivity was trapped by the limitations of the room, and I only had my one nurse in there for company, though she was just an extension of the room itself. It was the most terrifying thing I’ve ever thought. I thought I was the only thing that existed, and thus I had no desire to exist.
The allegory fits into my previously established subjective existentialism worldview in which you are able to choose your perspective and values for your own benefit. It’s somewhat selfish at it’s core, but at our core we are all singular subjective beings so there is no option other than being selfish! I value my obligations to other people because it proves to me that I add value to something other than myself. These values are the basic building blocks of human society and the reason why anybody gets anything done.
The next time you find yourself just floating in your own well, have somebody dump some water in there and force yourself to swim out. You may swim out with a new raison d’etre or joie de virve or at least some foie gras.
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:
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:
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.
Chemo Romance, not that crappy band….
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.
Good Afternoon. How are you?
You weren’t kept waiting too long were you? Do you need anything a drink? Water? Coffee?
<Cancer Secretary, Did you take care of these nice people out there? Ok, thank you! Hold my calls for a while please!>
She’s fitting in so well here, I’m glad I hired her. Things have gotten MUCH better around these parts. Please have a seat.
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.
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.