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...

7 Year Itch

It's been seven years since that spot in my chest x-ray changed my life. SEVEN YEARS...! To say that I didn't think I was going to make it this long is a gross understatement, however I do find it incredible how fast it all went. 

I still recall with a painful feeling speaking with my first Oncologist about survival rates of St IV Cancer (< 3-5 mos). My first Chemo (they went thru my hand), and arguing with insurance about how they need to cover $6K PET scans. Yay 'Murica health care...

I'll take 2

Yet, as pockmarked as the path has been since 2016 I have been fortunate to of participated in 3 clinical trails, the last one enduring over 3 years: Repotrectinib. But as all good things, this one is coming to an end.

or REPO, as I call it cuz it sounds cool

Earlier in 2021, I had a brain MRI that showed a couple of suspicious spots. My medical team decided to keep me on the Repo trail, but suggested adding a Neurosurgeon to the mix, hoping this specialist would be apt at detecting cancer growth vs brain edema (swelling). By 2022, everything seemed fine since these 2 spots did not increase in size. But they also did not decrease, which is an indicator that the med is no longer working. That's a huge issue with these types of clinical trails: they need evidence that the medicine is crossing the blood-brain barrier (into the head through the neck) and actively killing the cancer. Otherwise, it's considered a waste even tho there is zero proof cancer growth exists. I know, it's silly...

 

Capiche?

The Neurosurgeon was the first to sound off this year that I needed Radiation treatment on the suspicious lesions (or get brain surgery to remove them). I was incredulous, especially since this news was coming from a Brain Doc and not an Oncologist. He was very gung-ho about it, and almost insisted by scheduling time on the butcher block. But I pushed back and decided to consult with my 2nd opinion team before risking anything that would jeopardize any stable path I was on (or thought I was on). Honestly tho, 2nd & 3rd opinions will be your salvation against physicians who are trigger-happy. 

or have new car payments

My 2nd opinion med-team concurred that it will be in my best interest to treat the lesions at least with radiation to help eradicate them. However, there was no real urgency since the size of them were very small and it would take one session to treat. Still, I was bummed since I went from being somewhat "stable" in Dec 2022 to needing radiation treatment in April 2023. In addition, this would bump me from the Repo trail and potentially put me on a back channel to another trail (if available) or back to chemo. Needless to say, I'm up shit's creek with a turd paddle. I had a decision to make.

Some guy's get all the Luck!

Well, here we are on May 21st 2023. I did get radiation to the noggin' a little over one month ago and it's been not the best experience. Extreme fatigue and brain fog are most common, but the added steroids and anti-seizure meds to counter the side effects have been the worst. I hate to admit it, but I regret having received the radiation. I feel like I'm in a slow motion mind fudge, while time clocks away at a lightning pace. Life gets surreal, or maybe it's just cabin fever. Who knows. I'm just reaching a level of desperation where I want to be able to walk to the end of the block without feeling like I ran a marathon. To get back on that motorcycle and spin around the cage.

Welcome back to work

 

But not all is dire. Just as I was hearing about stopping Repo I was also invited to participate in the latest promising cancer clinical trail at UCI:

                                      TALETRECTINIB


        So, it's back to square one for me. Albeit, with the experience of Super Fly T.N.T. & the Guns of Navarone.

       

The unbearable likeness of being

Welcome to 2023, where new beginnings are measured by old resolutions. I've traveled the world 7 years of cancer treatments, only to realize I'm the same fucking shmuck. What I mean is that I thought Cancer was supposed to be some magic pill to evolve me. Like the red pill Neo took to wake up. I discovered that my TRUTH was only a man desperate to ensure his family would be OK after his demise.

Do you mind if we dance wif yo dates?

 No secret guardian angel message, no secret to life uncovered, no insight to the secret meaning of life. Just a bunch of expectations to fulfill a  hidden goal, measured in dollars that would ensure the continued survival of my bloodline. Boilerplate life. Fuck, this sounds depressing. 

But I hope my sincere words come across. The stress endured to secure my family has been evident since my first child was born in 2012, but the stress has compounded since I was first DX in 2016. And, if I may be frank, I thought I'd be dead by now. Really. I did not think I'd be alive in 2023, and this has certainly complicated things. 

How? Well, that's the rub. Since I didn't plan to live this long I had "cancelled" my life goals in 2016 and figured I'd work at my job until the end. But I'm still here. Seven years later, and I've reignited that hunger to achieve those old goals. Now, I just need to convince myself that I still got it. That I'm worthy.

Silly, I know. But I was raised catholic, and this is a huge wall to crack before I can accept this concept. Mental concept.

I accept where I stand. Cancer ain't a bitch. I've faced Death. No one can EVER understand that. The ultimate Craps table, where the Natural abounds. But I need to rebuild my confidence as that Man that has those silly stories I'd hope to pitch as animated projects, or write that children's book that's been living in my mind. Or perhaps, just be that example of a courageous spirit that did not quit.

I fucking love this scene.

L'chaim

 June, 2022:

An American, a Russian, and a Mexican are stranded on an island after a ship wreck. The next day, a crate-full of expensive liqueur washes up on the beach and the castaways decide to play lots to claim its full ownership. The American & the Russian decide to measure their dicks to decide who wins. Meanwhile, the Mexican drinks up the contents of the crate as both idiots waste time discussing foreskin rules.

The lesson? Focus.

This month marks the 6th anniversary on my cancer diagnosis. 4th stage, if it matters. Meaning, that this bitch has been coursing thru my veins since 2016, like a banshee out of hell. Yet, I've been lucky to of tamed the shit out of it thanks to not only science, but my cheery disposition. I'm going on cycle 34 (30 months) of the Repotrectinib trail which has been a life saver and a fucking curse. This first half of 2022 I was told I progressed again (5th time) and almost bumped off the trail. But thanks to ongoing 2nd & 3rd opinions from a Neurosurgeon & Radiation Oncologist, I'm back in the game like a god-damned Phoenix with a weak spark. 

My attitude taste like burning.

Focus has the main contributor to my well being. Sure, the Avant guard meds too, but there is much to be said about placebos and happy thoughts. Often, my mind & spirit was poisoned with greed, envy & jealousy. Like a fucking viper that bit itself to prove something. In the end, I didn't gain much other than a weak disposition that was threatened by things I've never accomplished, Meaning, my grass was never as green as the Jones'.

That's what cancer does. It fucks with your mind into thinking how you've wasted your life. 

But you can learn to lift yourself from that. Cancer makes you slow down and appreciate the small things in life. Sounds cliché, sure. But fuck if it isn't true.

I'm grateful for cancer, in that it helped surface a side in me I never knew existed. It's nice to be conscious of this and still stop to smell the roses, or see my daughters grow.

Life is indeed a blessing.

Perpetual Blessing

And there is always this: