The End of the Hard Stuff

September was a hard month. It was the final month of my “consolidation chemo”… which, as I understand it, was a way to consolidate every possible negative side effect of my treatment and forcefully cram it up my ass for three straight weeks. My chemo took the shape of General Sherman as he scorched his way through my American South.

Some Civil War history lessons for you
Some Civil War history lessons for you

The total warfare tactic was designed as a final blow against my currently non-existent disease.  South Cancerlina had surrendered months ago, but union doctors needed to burn it in order to make sure the war would not continue in the future.

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Adding Salt to the Ocean

Buoyancy has eluded me for months. I’ve been an object heavier than the medium in which I’ve been suspended. This has caused me to sink, has kept my head below the surface and left me suspended beneath the surface plane in which I felt secure enough to exist.

It’s been like this for months, which is why I’ve been quiet. It’s hard to communicate under water when you only have a few precious lungfuls of air that you think you’ll need to survive when you are under.

The current is changing, though. I’ve found a way to shed some of my mass or increase my volume, or whatever makes more sense for the density equation. We’ll say I gained some volume since my chubby travel season belly definitely hasn’t lost any mass.

yes I wore a ton of sunscreen all the time
yes I wore a ton of sunscreen all the time

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#Inspiration

It’s been a while, sorry. I haven’t felt inspired to be inspirational… unless you think that complaining, expressions of grumpiness or the general feeling of being “over it” is inspirational to you.  I heard that “I” word a lot to describe how I reacted to the cancer and what I did with that reaction, but it always made me feel a little strange.  The only time I ever felt “inspiring” was when I was high as a kite because I was roided to the gills. I didn’t even know where I was half the time but inspiration burst from my face as if it were banana flavored vodka and I were a hazed sorority pledge.  Then I sobered up and got hungover, I was no longer inspired and thus not inspiring.

It’s been over a month since I gave you any updates. A lot has happened, but a lot always happens and quite frankly I’m tired of it. I used to be excited to have something to write about when something weird happened to me, like all of my blood turning green and starting to vibrate, but now I’m just fucking over it.  It’s not funny to me anymore, mostly because I don’t have cancer but still have to keep injecting myself with poison for the next 6 months “just to be safe.” Don’t get me wrong, I’m very into the “better safe than sorry” mentality… but I haven’t had a biopsy since mid-February (which was cancer free) and I’ve had so many complications from treatment since then.  Doesn’t matter, though… we have to stick to the program! We must live and die by the chemo regimen that was designed for somebody much younger than I am (because I have pediatric cancer) that has caused an unusual amount of problems (according to how my nurses react to me) in my body. Gotta stick to it, though! It must be right because it was written down. There is room for minor alterations to make sure that the treatment plan doesn’t kill me (and it has come close to doing so), but we need to stay the course! How else will these drug companies make any money if I don’t?

I’ve had so many complications from chemo that they couldn’t even give me chemo for the entire month of May because the chemo they gave me fucked my body up to the point where I couldn’t receive chemo.  I had so many spinal taps that my central nervous system started to revolt and cause excruciating full body pain and headaches whenever I stood up (which happened the week we moved into our house, so I spent the entire move lying on the floor directing friends and hired hands what to do like a paraplegic symphony conductor) and my liver essentially shut down and stopped metabolizing fat which brought my blood fat levels up 700 times what they should be.  They were the highest levels the hospital had ever seen, and some of the highest levels I could find on the internet. I dangerously close to either having a stroke or pancreatitis, so they had to remove all of my blood, spin it in a centrifuge, remove the fat and then put my blood back into my body… three times in a week.

This is what came out of my blood on the first session. That is 4 quarts of blood fat… all of the nurses were grossed out (which is hard to do):

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This meant that I had to switch from a “eat whatever you can!” to a “don’t eat anything that you like” diet. Food was my biggest comfort, but of course that’s gone now. Thankfully Liana is a wonderful help when it comes to low fat cooking…

None of these things are symptoms of leukemia, by the way.

After my month off of chemo (and after the dangerous levels of triglycerides were removed from my blood), I felt great. I felt like I used to feel… normal, energetic, not nauseated… it was great. I got a taste of normality and it left me wanting more. Of course as soon as I felt better it was time to start chemo back up again, so here we are. I wake up every morning open my eyes and stay in bed for a few hours fighting off the urge to throw up, then I wake up and eat something (low in fat, of course) and have to take deep breathes to keep my stomach lining from revolting on me, and then sit in my home office and work…which is more difficult than it used to because somewhere around half of my brain cells have died.

Going through weird treatments while in the hospital is one thing, but I’m home now.  I’m working full time, I’m trying to hold on to at least a skeleton of my social life, I’m trying to maintain a relationship, I’ve got to keep up on household chores, I have responsibilities…I’ve transitioned back into a “normal life” while still having this very abnormal shit going on. But hey, at least I get a new bill every day…that’s nice and normal!

Forgive me for the change in attitude, I’m just over it.

I didn’t want to write this; I don’t have anything nice to say. I hope I haven’t unspired anybody.

Funds Were Raised, Funs Were Had, Cancer Was Trolled

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.

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An Allegory

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 simpsons reference) so I was left to luck and my own devices to myself 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.

The-Well

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Everybody Gets Leucky Fundraiser!

No, you aren’t getting Leukemia… but you ARE coming to the fundraiser I’m throwing on April 18th at Mile High Spirits in Denver!

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MEMBERS OF rastasaurus, not the whole band.

 

My friend Anna, as you may have heard, is running the Colfax Marathon for the Leukemia and Lymphoma Society, so we are throwing a party to raise the money! There will be live music, drink specials, a cornhole tournament, prize drawings (including some high value items donated from some great sponsors!!) and a ton of dancing and fun!

I’ll be your MC for the evening, so come and watch my chemo-ass hobble onto the stage and breathe heavily into the microphone!

The festivities begin at 3pm or so on April 18th, so come early before whatever plans you have, or come late after whatever plans you have! Thanks for your support!

And if you can’t make it, consider tossing a few bucks directly to Anna’s marathon fundraising page, all the money goes to the same place!

 http://pages.teamintraining.org/rm/colfax15/anna

Looking The Part

Cancer has the tendency to shove dilemmas in your face, or in this case, on your head.

I want to return to normal. That is the number one goal of my treatment, of my life. I want things to go back to the way they were before I was diagnosed with ALL (which stands for “all of the cancers”). I want to feel normal, act normal, do normal things, and look normal again. The problem with this, though, is I am NOT normal yet and won’t be for many months.

The easiest of the normals for me to return to would be “looking normal.” My facial hair has grown back normally and my head hair is on its way, despite a few thin patches. My loving girlfriend teases that I look like a baby bird waiting for its mother to barf dinner into its open beak.

I'm the one in the middle
I’m the one in the middle

 

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Quick Joke:

A funny thing about chemo is that it makes my dog very gassy whenever I’m around my girlfriend.

Taking Back Control or F*ck You I Won’t Do What You Tell Me

Remember that early post I made about giving up control and accepting help and all that? Well I take it all back. Giving up control of my own destiny has landed me in my current situation, which is less than optimal. As with anything, there is a balance that must be struck between giving in and taking charge. You can’t just float on letting other people make your decisions for you, even in the most extreme situations, because no matter what there are some things that other people don’t know. For instance, nobody else knows what is good for you all the time. You, as a purely subjective being, are the only person who knows what is truly good for you. Sure you may not know what chemo drug is best for your cancer, but know more than anybody how that drug affects you.

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Cancer and Pregnancy: A Comparison

I’m almost 30…that means I have SIX weddings to go to this summer and many of my friends are getting pregnant. The similarities between my condition and that of my preggo friends are pretty astounding. For instance, we both have foreign bodies growing inside of us, though I’m actively trying to destroy mine while they are incubating theirs for life. Here’s a list of more similarites between cancer and pregnancy:

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