HELL-o from the Other Side!
The last 6 months have been the most challenging in this whole Cancer journey. It's like going from the frying pan into the fire, then rolling what's left into a crappy diaper and leaving it in the sun.
Since my last post in May 2023 I've started a whole new clinical trail called Taletrectinib, a very promising cancer drug inhibitor that has (apparently) showed good results in the previous pool of participants, usually numbered in the 100s worldwide. But as I was easing into this trail I had some health trails of my own.
Back in April, I had to get slight Radiation treatment to the noggin' for a couple of small spots discovered in a previous brain MRI. I was on cycle 47 (3+ years) of Repotrectinib, which is a great run for any clinical trail. However, this would potentially bounce me off since the med was deemed no longer effective. This was problematic: Repo was the "last" threshold of trails available and I was concerned that there would not be other options. It would be back to chemo until something else surfaced. Luckily, it did.
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| All Naturals the past 7 years |
The pharmaceutical company manufacturing Repo allowed me to stay on the trail while things got sorted out with this new, up and coming trail called Taletrectinib. As mentioned above, this drug is particularly less toxic than the previous meds I've been taking and showed much improvement in the patients enrolled during Phase 1. And, as luck would have it, UCI was starting Phase 2 and I was invited to be their first guinea pig, which I gladly accepted. June 14th was set as the start date, but first I would need to commence a "wash out" period beginning June 10th, where Repo is stopped for a few days to clean it out of my system. A body "reset".
So begins my horror show:
About 2 days after stopping the Repo I began having extreme seizures/tremors on my right foot. Kinda like after walking/running for a long period. These would subside after a while, but as time went on, these seizures started travelling up my calf, then the knee, thigh & hip. Eventually, it got pretty bad where the whole right side of my body (from the foot, leg, thorax, and hand/arm) would seize and tremble to an uncontrollable point. I didn't feel any pain, but it was a scary experience. Ultimately, I had to be driven to the UCI ER at 3 am since the seizures began affecting my breathing. Funny enough, it was on the same day I was set to begin the Talectrectinib trail, June 14th.
Shit got worse once I was admitted. My right side continued to seize up and I was locked into a crazy pretzel twist you would generally see in a Cirque du Soleil show. At this point, 4 hours had gone by, yet my medical team did not want to give me any anti-seizure meds since this would interfere with the new clinical trail protocol. So essentially, they were discussing on how to mitigate this issue without losing their precious patient #1. By then, I was begging them to give me something. I was undergoing a hell not experienced before and no longer cared about the cancer clinical trail. Really. I thought death was better than undergoing this shit.
Eventually, they did give me something intravenously (a sedative and Avastin) which helped control the tremors and I passed out for a few hours. A much needed rest. 😊😊😊😊
Then, I woke up to the whole right side of my body paralyzed...
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| open signs of the shape of things to come... |
By that afternoon there was still no answers as to the cause of this. At first, it was thought that the original brain tumor (treated back in 2017) was acting up. Another thought was Radiation necrosis, which is dead brain tissue that builds up edema (swelling). Another was that there was a new tumor growing... All hypothetical at the time. The UCI neurologists wanted to perform brain surgery to see inside, while others wanted a new biopsy. I was left scatterbrained that day. Fighting the fear of not being able to move my right leg, let alone my dominant hand. I mean, how would I jack it from now on?
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| Forgive my Gallows Humor, but I'm immune to it now. |
Day 2 was no better as I lay there, contemplating whatever future I had left. I was at the precipice of death's threshold. Confronting my own mortality and coming to the conclusion that the only soul you have is a mirror of your own thoughts. There is no one in the clouds guiding you. No man behind the curtain. No fucking cricket singing tunes about good & bad behaviors. My Ego & id felt exposed and humbled, yet I had no desire to grasp onto the typical theological beliefs in an effort to cleanse myself should I die right there and then. I was angry and disappointed. Betrayed by the one who marked Cain.
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| Do you like Apples? |
But I used that same anger the next few days to turn things around as I slowly commanded my limbs to move. Starting with my right hand, then my arm. By day 4 I was able to slowly lift and wiggle the toes on my right foot. I still couldn't walk freely, but fuck if I didn't see this as evidence of mind over matter. Evidence my own strength. I was discharged from the hospital the next day, but now relying on a walker to move around.
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| Look Ma'. I'm growed up! SHIEEEETTTT.... |
Eventually, I was diagnosed with "Todd's Palsy", a temporary paralysis brought on by seizures, which in turn were brought on by "withdrawals" of the Repo med which I stopped during the wash-out period. At least that was what my Medical team concluded, but honestly this remains hypothetical. I was allowed to continue the Taletrectinib trail, now with an added battery of anti-seizure meds, steroids, et al. Plus, at-home Physical Therapy which would help me regain movement and strengthen my right leg.
And just as things were improving...
Part II soon...
