Saturday, August 3, 2019

Tempus Fugit Fukit

There's been a lot of ups & downs since I last wrote on this blog:

New meds, new scans, new results, new fears, and much more new joys.

And as I look back at the path I've experienced these past 3 years I can't help but think of how fast time flies. My oldest daughter will attend 2nd grade in a few weeks and my youngest will turn 4. This is beyond what I thought I'd experience when I was originally diagnosed, and it is pure joy to know that I am here, healthy, and in good spirits.

Quihubole Bueyes!
Since the beginning of 2019 I've been on a clinical trail for a cancer drug that acts as an inhibitor called Lorlatinib. What is does is block a particular enzyme from working and slows the growth of cancer cells. This is very much the same way Xalkori worked (the previous drug I was taking), with the exception that Lorlatinib crosses the "brain-body" threshold. This is important since 4th Stage Lung Cancer patients tend to get tumor spread into the brain (as I did in Nov 2017). And this has brought on some very unique side effects (explained further below).

An Overview.

While I underwent standard Chemotherapy in 2016 I lost 25 lbs. Man, I was in a quasi-happy/sad state where it was nice to see a thinner me, yet feeling awful with all those drugs circulating in my veins. But, I went ahead and bought new clothing thinking I would never gain it back.
at los pinches outlets













UNTIL!

I got the brain tumors. My Dr had me take the dreaded Dexamethasone, a steroid to help reduce brain swelling. This fucking drug had me go raving mad. The side effects: my joints ached, I couldn't walk one flight of stairs, and I gained 20 lbs in one month. It was crazy. Next, the Xalkori side effects: an itchy rash, double vision, fatigue and weakness, and sleight weight stability due to the heavy chorro sessions.


chorro galore
























And then came Lorlatinib.



My new girlfriend

My oncologist had recommended that I join this clinical trail back in Nov 2018, as he felt it would be important to get a treatment that would also affect the brain. After beginning, nothing was really noticeable at first regarding side effects other that the typical rash, headache, and other physiological effects. However, in a few weeks I noticed my head began buzzing with thoughts. It was as if my mind was on a conveyor belt, running thoughts and pictures constantly. I couldn't fall asleep. I'd close my eyes and my head would quickly fill up with images. Some fun, some scary. Some very scary...

"Do you mind if we dance wif yo' dates?"


Another side effect I've experienced was a change to my cognitive thinking. An example:

I was presenting a topic about Animation history to my colleagues at work. A subject I am well versed in and had an hour's worth of prepped material to show. I was feeling confident in my subject,  but all of a sudden my mind went blank and felt a sudden numbness. Panic attack? Not really. Most of you that know me closely know that I am a big boaster with a personality that can outshine the sun. In addition, I've presented similar material in many classrooms, pitch sessions, and animation studios. This was not your typical "fear of public speaking". This was different. I couldn't express myself and just sat there showing cartoons on the screen to a dumbfounded audience.



On another frightening moment, it was late night and we were putting the kids to bed when a small argument ensued regarding homework. It escalated to a boiling point where I reached an emotional numbness to where all I could not recognize my family, yet I was able to perceive the four of us in our "raw" form... What I mean is that in-my-mind's eye we shed our human selves and exposed was the raw material from which everything is composed in the universe. A hallucination perhaps, but in that brief moment we were equals (not parent-child). Pure spirits in a debate about simple homework duties...

^this X 4

Ok, I know what you're thinking. WHAT THE FUCK is this guy talking about? Even I was confused by all this back then. But I realize NOW that as my body was getting used to this new clinical trail so was my brain. After years of having my body subjected to chemotherapy, immunotherapy, radiation (lung, hip, brain), Targeted Treatment, Meds to treat other shit, et al. THIS WAS THE FIRST TIME I was taking an anti-cancer drug that is specifically designed to treat the brain, and it has manifested itself greatly.

I feel like I've had more spirit animals than Elvis, Jesus, and The Beatles combined.
These particular side effects were unknown at the time, and some patients needed to stop the treatment due to this. I communicated my experience to the clinical trail team to which they took note. They were especially interested in seeing how I coped with this cognitive-thinking aspect of the drug since I was "able to get a handle" on it.



That story is much deeper to tell later. For now I am happy to report that the FDA finally approved this drug, now christened as LOBRENA, with the added side effect of:

• euphoria
• mania
• mood swings
• personality changes
• weight gain (extra 15 lbs, but better than 6 ft under)

Part two soon...





PS: For good measure:

https://www.youtube.com/watch?v=qA4XX15xatk















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