Last Chapter, part lll (or Act Four.5 1/2)

This Post was written in Spring 2024 and sat on the burner, so the sentiments are from then (paper planes). I'll have a conclusion of this story on New Year's Day 2025.

Every book has its ending. My last two posts (found here & here) are titled "Last Chapter" since, in all honesty, I feel this might be it. The last 18 months have been a fucking bear since being diagnosed with Lung Cancer in 2016. I know, sounds dramatic. But check out the fun activities I did:

Duke's Funland 2023

• April 2023: Radiation to 2 new spots in the brain, bouncing me off the Repo trial.
• May 2023: I agree to join the Taletectrinib trial, so I begin the one week wash-out.
• June 2023: I experience severe seizures that paralyze the whole right side of my body.
• July 2023: I begin PT to recover mobility in my right leg & arm.
• August 2023: Excruciating pain develops in my R hip. PT stops.
• September 2023: Right Hip Surgery (total hip replacement).
• October 2023: I begin PT (again), but now with the added accomodations for hip replacement.
• November 2023: Brain MRI show tumor progression.

WTF?!!! Again?

again...

Brief Backstory: Before starting the Taletrectnib trail in May 2023 several tests and scans are done to map a Target tumor reference, a "square-one" of sorts from where measurable sizes of existing tumors are targeted and used as a barometer during the trial to determine whether the med is working or not. A cancer canary in the coal mine. 

tweet you healthy bastard

While on the trial these are the only tumors observed. If these targeted tumors shrink then the med is working. If they grow, it's progression. Capiche?

A simple formula to follow. But herein lies the fucking issue: This fosters TUNNEL VISION.

As I continued on the trail my medical team kept telling me that Taletrectinib was working and keeping thing stable. In spite of all the extracurricular health issues, it seemed I was beating cancer. However, the November 2023 brain MRI had an urgent note from the radiologist where it was noted that there were some concerning issues related outside of the "target tumors". 

Huh?

I only see one

A newly discovered tumor that measured 20 mm directly over my primary motor cortex (the size of a nickel). And another one measuring about 10 mm on my right brain hemisphere that had not been observed in the last reports.

the least of my problems

My med team was aghast as they realized that their lack of attention led to some aggressive tumor growth the last 6 months. Potentially blinded by their enthusiasm over the success rate of Taletrectinib.

I was appalled. I lost total confidence in the UCI staff, but I was stuck to this never-ending cycle of trial commitments expecting things to get better. However, by December 2023 I consulted with my Neurologist at Cedars-Sinai who concurred with the findings and said that these 2 new tumors needed to be, as the kids say, yeeted, and gave me a choice: brain surgery or radiation. 

as if?

Luckily, the tumors were close to the surface of my scalp. Brain surgery seemed pretty scary. But, to do brain radiation again? I just had it done 8 months ago...

 

I said "FUCK NO" to both. I was tired and angry of not getting any solid feedback on my overall health. I expected much better medical service, especially being the one & only Taletrectinib trial participant at UCI. Yet, they fucked me up by not noting that I had two fucking extra tumors growing all this time.

Unfortunately, I started experiencing the dreadful seizures again. Not as severe, but nonetheless concerning. It seemed the larger tumor was progressing rapidly and, once again, needed to make a life changing choice.

By January 2024 I was getting CT Sims of my brain, where they measure the precise locations of these fucking tumors. By now the large one was 27 mm and the other 14 mm. They were growing. Fast.

Dealer's choice

Opting for Radiation, I got beamed up and energized in February 2024, resulting in my second Gamma Knife treatment to the brain in less than 10 months. I'm surprised I'm not glowing after all of this, but brain surgery sounded to risky. Especially with the larger tumor bolted into my left motor cortex.

 

Plus, I figured I'd seizure like Elvis

I was permitted to continue on the Taletrectinib, but I told them to Fuck Off. I was done with this shitty trial that was as useful as tits on a boar. At this point, I figured I'd get back on chemo and stay on it until I drifted into Lay-Z Boy at hospice. I mean, what else do I have to hope for?

you have your Valhalla, I have mine 

And yet again: God, the Universe, or the fucking Secret has another Ace up their sleeve: I was able to land on the last frontier of Lung Cancer ROS-1 + clinical trials. A trial with great track record, but very limited slots. The much coveted, superstar trial that everyone is craving: Nuvalent.

Lucky Mother Fucker once again.

why me? why not me?

I've earned my millions, and yet surpassed the greatest odds this Mexican can count. Do you believe in fate or miracles? Or can one man navigate the turmoils of life and rise to his own purpose?

To be concluded soon.