#inspiration

It’s been a while, sorry. I haven’t felt inspired to be inspirational… unless you think that complaining, grump expressions 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.

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