It's been a long ride dear Reader. Your MexiCAN friend is exhausted in many ways, yet I wonder if this is just the meds, post radiation s/e, or just growing old & bitter.
Aging like a fine vinegar
It's hard not to look back and wonder "what-if". Especially as I stretch into the golden years, better known as AARP lunch-meat. Nonetheless, here I am. Heading into 2025 with zero resolutions, other than to just enjoy the present and realize that I'm alive. It's been a while reconciling that fact. I feel a constant anger in my basement. Something that I quite haven't brought to surface for fear of exposing my family to the lingering resentment I quite can't really define. Resentment to living? Or feeling the obligation to live on so that others can continue living up to their status-quo?
similar fire, but not quite this prophetic
It's especially hard when you see other cancer patients living their "journey" by contributing to humanity by feeding the homeless or climbing Machu Picchu, expecting to find God thru Instagram posts. Me? I don't give a fuck at all about any of that shit. But I highly feel a sense of obligation in making sure my family is covered as much as possible after my demise. And that's certainly defined my cancer journey.
Yay Cancer!!! #machupichufeedingtribessnickers
I've been at this for almost eight years: Chemo, radiation, immunotherapy, hip replacement and 5 clinical trials. Yet, the biggest issue has been keeping myself mentally stable to ensure the welfare of my family. Trying to keep the norms has been the biggest fucking burden on me. But recently my daughters have noticed the chinks in my armor, and weirdly enough I'm embarrassed by that. They're realizing that their Superman is mortal, and has anger.
Best comic EVAR, I might add
It's tough, especially as my oldest is reaching her teens. She's coming into her own persona, and the last thing I want to be is an weak/unsuitable father. I know, seems extreme. But I want the best for both of them, and I often wonder if it's best to fade away as opposed to continually expose them to this resentment.The unnatural resentment for being forced to live so they can be OK.
Jesus, what a concept.
Holy Toast!!!
Maybe I'm just rambling after taking 3 shots of Don Julio Reserva. It's already 2 am and have nothing better to do other than to put my thoughts into writing as I listen to the Xanadu soundtrack.
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 showtumorprogression.
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?
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.
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.
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 alsodid 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 teambefore 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:
