Appropriate for Third Graders (Really!)

I received more cards from another third grade class, this time from a teacher friend in New York State. Unlike my previous reaction to a similar situation, I decided to write an actual response to the class. Hopefully they are able to get something out of it!

Dear Mrs. Mellon’s Third Grade Class,

“Your Heart should be filled with Happiness, Not Sadness” – That is a quote from one of your cards…and you have no idea how right you are.

Please allow me to express my sincerest gratitude to your entire class for the wonderful care package of cards, letters, stories, words of wisdom and art projects that I received in the mail. If you do not remember, my name is Jason and I am a very good friend of Mrs. Mellon’s.

I live in Denver, Colorado (somebody get up and point to that on the map right now, I’M SERIOUS. Now point to Rochester, New York. DO IT.) Now somebody raise their hand and tell Mrs. Mellon one fact about Denver or Colorado. Good job. Any others?

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The Glory of Freedom

Look at this. Look at those little dangling blue things with the orange nubs. Those nubs are where I have been connected to my IV pole since 1/22/2015. At this very moment, and until about noon tomorrow, they are completely DETACHED from any and all wires and tubes. I am disconnected, COMPLETELY FREE, for the first time in weeks.

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The Singing Telegram of Friendship

A few days ago I received a cryptic text message from a dear friend that lives in California:

“I have a friend dropping off a package for you in the next few days. What hours can we work with? It is important that you are there and awake.”

“Is it a stripper or anything weird? Don’t forget that I am in an oncology ward,” I reminded.

No comment,” He said. This is when my concerns began. They grew with his expressions of mirthful mischief as we worked out a time that coincided with me being super high on hospital drugs immediately following a medical procedure. Whatever this was going to be be had me horrified.

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Cool Hand Leuk

kewlhand

 

Just screwing around while receiving some blood platelets….and because I’m a narcissist who likes to “photoshop” himself for fun. I’m Leucky enough to have the free time at the moment!

I haven’t seen the movie, but I do know that I’m better looking than that Paul Newjerk guy.

And yes, I did have a cigarette smuggled into the oncology unit for this picture.

 

The Cancer Perception

I’m going to let you in on a secret. So far my #leuck levels have kept me slightly beyond the reach of the long arm of the Leukemia Law, but there is a chance that I’ll be karmically asphyxiated by my own IV line for sharing this with you:

Cancer can be beautiful.

It goes against all thought, reason, logic and belief that something synonymous with death, decay, destruction and unspeakable heartache can be beautiful…

But cancer CAN be beautiful and it IS beautiful…. if you look at it right.

We all have an image of cancer ingrained in our minds. Every person on this earth has been touched by cancer, most likely in the most negative way possible. This negativity automatically evokes tragic images of suffering, loss, sadness and pain. They probably look something like this (but far worse in most cases):

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Staving off Cabin Fever: Hunting for RNs

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:

BORING
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:

NOT SORRY
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.

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Our Chemo Romance

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.
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We’re Up all Night to get Leucky

get leuckys

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.

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#Leucky

This is the title card from an old HBO show, if you aren't culture savvy.
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.

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The Donation Page

I just read through the comments and was many times moved to tears. Its a very humbling experience to receive money from your friends family and strangers in a time of need.

My amazingly wonderful friend from home (Oneida, NY) started the donation page. Oddly enough Kathryn was the first person I saw immediately after I received the news that my father died almost a year ago today, so she gave me that very important first hug.  Strangely enough I happened to be g-chatting her while my doctors gave me my Leukemia diagnosis, so she was again the first to know. Some might see this as bad luck, I see it as my guardian angel friend being very good at her job. The hug she gave me after this tragedy, however, came with a whole lot of force behind it from the donation page.

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