Last Chapter, part II (or Act Four.5)

Continuing from my previous post, July 2023 was a month full of hope after being discharged from the hospital and starting the Taletrectinib trial. I was immediately referred to an at-home physical therapy group that would visit twice a week to get my ass back in gear and regain the mobility of my right leg. But, boy was this NOT a walk-in-the-park (pun intended). 

Let's go fly a kite!

I pretty much had to learn to walk again and balance myself as best as possible during any activities involving my legs. Driving was out of the question. Going to the bathroom was no fun, and showering became my own Private Idaho. Eventually, I needed to redo my bathroom and install a walk-in shower, raised toilet, and bars (not the drinking kind, unfortunately). However, seeing this gave me a huge reality-check noting how I needed disability equipment in my home. Not that it's bad, but in a matter of months I saw myself go from a Happy-go-Lucky Adult to Disabled Senior, and this concept severely affected my self-esteem. My mood deteriorated rapidly, especially with the side effects of the Keppra (anti-seizure med) that only compounded the gremlins in my head. Yet, I kept the drudging on. Doing the PT routine as instructed and pushing myself in the hopes of a quick recovery. But then the grind got on me...

Slivered

An immense sharp pain began festering on my right hip accompanied by a weird "clicking" sound. Like a Psycho Woody Woodpecker, jabbing at my bone. Especially noted during the PT sessions, the therapist felt it was arthritis brought on by previous radiation treatment received back in 2016. He taught me stretches that helped relieve the pain slightly, but as we neared the end of the month the pain was too excruciating. I was popping Norco pills like tic-tacs in an effort to relieve the pain.

delicious rainbow drugs!

My Oncologist didn't feel this issue was due to the clinical trial. In fact, she was hoping Taletrectinib would help resolve it. But when the pain would not subside I was finally referred to an Orthopedic Oncologist, who amusing enough told me that my right hip was completely "fucked" (a technical term, apparently), and that I was in a dire need of a total hip arthroplasty. Better known as Hip Replacement.

Oh fuck, can't I get a break?

Mind you, this was late August. The scent of Purell & sickness was still permeating thru my mind from the previous hospital stay in June. And now I needed to be admitted again for hip surgery? I pushed back, saying this could bump me off the clinical trial. Would insurance even approve it? Was it even worth doing seeing everything that has happened the past two months? I mean, would you put brand new tires of a junker? Fuck...

Hmmm. I guess it could work out!

Plus, the added recovery time came into question (about 3 months). This would essentially null all of the PT work I did the previous 8 weeks. Pretty much starting over from square one. But, the Ortho-surgeon deemed this procedure as an emergency, noting that the head of my femur was fusing against my hip bone, which would eventually lead to a complete failure. 

This, but in my underoos

Things were moving fast. I needed to make a quick decision while weighing all the pros & cons in a relative short amount of time. By the end of this first visit they were already giving me surgery instructions, antibacterial body wash and a cute luffy where I had to scrub every crevasse. Once we got approval from the clinical trial people the surgery was scheduled one week later on September 1st, 2023 at UCI, where I would become the first bionic member of my family.

or Mexican Terminator

Boy, oh boy that was not fun. Aside from the hypodermic nerve blocker they used on my leg, I was also given an epidural to help mitigate surgery pain. Pretty much numbing the whole lower part of my body. I don't remember much after that, dozing off just as I was asking if I would ever recover the feeling in my Frank & Beans...

moist

Gratefully, I woke up a few hours later with a huge thick sponge between my legs to prevent them from criss-crossing each on other. That familiar paralyzed feeling was there, juxtaposed to the huge fucking pain in my right hip. I couldn't do much, aside from laying there enjoying the opiods and watching reruns of Shark Tank. Eventually, PT & OT folks started doing the rounds to make sure my body got some movement, even slightly. But that first day was excruciating. Barely making a few steps with the help of a walker and a belt around my belly to prevent me from falling.

It's not a Cadillac, but it ain't no Bug either

By Day 2, I started with my zen-training to will my feet/legs to move again, but now with much more restrictions since there were some requirements to keep excess movements very limited. But I kept at it, and by Day 4 I was able to sit solo, take a few small steps (with the walker), and drop kids in the pool.

Success! I was discharged that same day. Then the fun began.

Part lll soon...

Last Chapter (or Act Four)

 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.

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... 

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?

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.

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. 

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...