The LOLs of 2020

For those keeping track of my adventures in Cancerland you've pretty much heard me yelp again & again about being misdiagnosed with apparent progession. Not withstanding my ST IV diagnosis which, pretty much, is a death sentance for anyone who has cancer cells traveling thru their body like a bloody British soldier. It is quite a fact that those with the dreaded Stage 4 lung cancer diagnosis have a 25% survival rate of 6 months. 5% for those beyond that, yet here I am: 5 years, and stable. But God-damn it's been a ride.

My previous post outlined my experiences in this journey undergoing a clinical trail that set me in a course of uncertainty, yet I was willing to face the rocky experience and was determined to complete the study. What the hell, I had nothing to lose. Really. In my mind I was already "dead", and I figured that any legacy I had left would be by undergoing this study to help others. I realize that I had a young family to take care of, but ever since I was diagnosed I seemed to of reverted myself into a protective shell. A place where I can hunker down while I dealt with this matter alone. Unfortunately, this feeling became compounded by the drugs I was taking and steadily lead me to a very dark place.

TPX-0005, or Repotrectinib, is the strongest cancer drug I've been prescribed. It's designed to work for a very aggresive mutation called ROS-1 which affects 1%-2% of lung cancer patients, of which yours truly is. I almost wish there was a patch (biker vest) that was awarded to person with such a rare dreaded disease, yet this would not necesarilly be something to be proud about.

In Spring of 2020 my Oncologist mentioned that the scans demostrated significant growth in both my lungs and brain, yet experienced consultants in Pulmonolgy & Neurogoly disagreed. Eventually, the Lung was ruled out and deemed stable, but the brain had marked issues that needed to be addressed. There was increased edema (swelling) in my brain that was caused by the radiation treatment received in 2017. This caused necrosis (dead tissue) which unfortunately can be mis-dianosed as tumor progression. Not a big deal since this is always mistaken as such, but the issue was whether to have brain surgery to verify the matter and scoop out any dead cells from my noogin.

Worse, this dead tumor was deep in my motor-skills area which was affecting me physically: the right side of my body was much weaker, especially my leg. I needed to use a cane for most of the Summer and required the consultation of a Physichal Therapist. In a matter of weeks I became a frail old-guy, hunched and dragging my feet. Hard to fathom seeing as I always considered myself a stud-muffin. Yet, this really affected my psyche. I had to resume the dreaded Dexamethasone steroid to reduce the brain swelling, plus a plethora of other meds with their own side effects. It was bad. Just ask my wife/kids.

In time, the brain swelling went down and I improved significantly, much to the chagrin of my oncoligist who was ready to sign me off as a failure in the Repotrectinib trail. But, here I am, celebrating Cycle 13 of the study, or 1 full year enduring this drug. Plus, I had a follow up CT & Brain MRI last week. Results: All Stable.

Lesson learned: It ain't over til it's fucking over. And then some.

Fuck Cancer. Fuck COVID. Fuck Rasists Pieces of Shit.


Here I am 2021.

Even Flow

 A horse walks into a bar and the bartender asks "why the long face?" The horse responds "I have cancer".

Wait, what...?

I've been saving that joke for a long time, 2020 seems apropos for it. In fact, this year has been a shit-show that calls for a little bit of Gallows' Humor just make the day. 

A lot of fucking water has passed under the bridge since my last rant. To quickly recap: I started the TPX-0005 clinical trail at UCI (University of Irvine) in December 2019 with little issue. However, in January 2020, the first results from the study CT/MRI resulted in apparent progression in the brain & lung. Not fun news to hear while on a trail, but I've been at this impasse several times before and figured my body was still adjusting to the med. Still, I felt that familiar sting as my heart sank a little more.

fudge

It was recommended that I consult with the original medical team from Cedars Sinai for assessment, in particular the Radiation Oncologist & Pulmonologist. It was crucial to rule out the areas in my body that were treated in 2017 vs the suspicious growth seen in this latest scan. As such, I'll break the matter in two segments.

Not mine, but you get the idea

Part 1: Lung tumor.

The January scan showed an marked increase in the tumor size. Enough so, that it warranted a visit to the Pulmonologist to get his view on the matter. Within 2 minutes he was gung-ho on getting a biopsy and immediately had me scheduled to be on the butcher block the next day. I was speechless, but accepted my fate yet remained in a haze of confusion. Later that day, a preliminary chest CT was scheduled to map out my lungs which would guarantee the best biopsy slice. But soon afterward I received a phone call from the Pulmonologist saying there was no need for the biopsy. It turns out that no growth was demonstrated when comparing this scan to the original 2017 scan. No change in shape, no suspicious activity, no growth. Just the same old stupid dead tumor.

I called the UCI oncologist to confirm these findings and indeed, the results came back negative. What the Fuck, says I. Another false positive. Another lamb is wolf's clothing. Another chip off the grindstone.

Part 2: Brain metastasis.

I followed up with the Radiation Oncologist who seemed unsure of what the study MRI scans were showing. In general, there was edema (swelling) in certain areas of my brain. This is indicative of a tumor, but it is also indicative of radiation necrosis (dead brain tissue caused by radiation) and can be misread as "growth". He suggested consulting with a Neurosurgeon that will offer further insight to this matter and provide a resolution, if any.

Not mine, but you get the idea.

It was nice to stay within the Cedars Sinai network since every discipline is within close reach, and the Neurosurgeon's practice was quite a bump in style from all the other Dr.'s offices. I presented the January MRI report which seemed to leave him with similar doubts in regards to questionable "growth" vs edema. So, he ordered a new MRI to be done, but with an added procedure called Spectroscopy, which measures chemical signatures that detect tumors. It made the scan time longer, but it was worth the wait since the scan resulted in negative tumor present. What the Fuck? says I. Again.

yay

I called the UCI Oncologist to confirm, but she still felt this needed ongoing observation. So, another MRI was scheduled, but this time at UCI. A third brain MRI this year, and it was barely February. 

Now, getting a boat load of scans can be unhealthy, especially with all the contrast/radiation they pump in your veins to get a better image. But I go as directed, especially if I want to continue on the trail (as-is). Besides, we were still in the early stages of the new year. I was certain things would get better...

HAPPY 2020!!!

to be cont...

Act I: The warmth of the sun

This is the first of many experiences I wish to put on-the-record as a means to keep my blog balanced with memories of better times. A reminder that I've had a full life and, at least, to show my daughters of the type a man their father was/is.

Chapter One.

One of the best experiences I've had was driving down South on Highway 1 in Baja.

1986 was a magical year for me. I was 19, but I've not experienced much of life's adventures, yet alone her pleasures. But, when a cousin mentioned he needed to travel to La Paz for a job commitment I was one hundred percent on board, especially when he scored my uncle's Suburban for the road trip.

Turquoise Gold

Living in Ensenada exposed me to much of the Baja culture: Off-road racing, beach camping, fishing off the piers; it was of great joy to partake in these activities. But I was somewhat unnerved traveling the 1,300 kilometres (800 miles) thru a lone highway. This was a calmer time in regards to cartel & military check points, but the thought of driving that old jalopy down unknown territory was intimidating. There were no cell phones of course, and our GPS was an old map where my dad marked known gas stations. Still, the call of adventure was boiling in my psyche, not to mention it was Summer time.

Melo llena de regular, porfa...

I can't remember the exact date, but we prepped our gear early on. Not expecting stops along the way. Just a straight 1300 Km road trek, between Ensenada and La Paz. A journey that could be completed in 1 day. We took 5.

About 20 straight hours.

Huevos Dias

The sun pierced the lavender morning as we finished packing our rig and set down South. Mexico has the reputation of an intrepid tourist's dream, and, as it were, there are many true adventures froth with risk. Personally, I valued my hide and decided to only handle those that seemed tame. Still, nature is the great equalizer and I figured when your are met with her challenge one must meet it. Taking this venture across the rocky desert would be a welcomed experience.

Are we there yet?

Cabron...

Next up: Rig Races in Maneadero, Cock Fights in Santo Tomas, and the green grass of Ejidos.

Corona Hex

There's a dark comic called "Crossed" that is very violent & disturbing. It deals with a group of survivors dealing with a world-wide pandemic that causes its victims to become feral savages, identified by a crisscross rash that appears on their face. Notwithstanding our current situation, I can't help but think that life is imitating art.

Don't Google it. Really, don't.

It's such a strange time in this world, witnessing the surge of population's fear as they rush out to horde toilet paper & hand sanitizer. Relying on their primitive instinct to survive by all means, I wonder if they are not becoming the feral savages that are outlined in this comic. Oh, not in the gore-fest that presents itself in the panels, but in the panicked way people are responding to Covid-19. 

Majoring in shit, literally.

When I started my first clinical trail (lorlatinib) in 2018 I had to sign a huge waiver that outlined the potential benefits and risks. Most of the side effects were well known, however there was always the chance that a participant could experience a side effect malleable to their body chemistry. That 1%-2% of people that experienced unbearable pain, hallucinations, or a mood swings that has yet to be defined. Add to that the disbelief from your medical team that seem hesitant to acknowledged your report. You wind up wondering if you experienced anything at all which gives me some uncertainty as to how this Corona virus thing will pan out.

Pfizer be a lady tonight!

Just look at how life was impacted dramatically in the past week. The response went from a perceived hoax to a defined pandemic in less than six days, ultimately reaching a tipping point where everyone must be quarantined in their home. Not even God could create the earth that fast (if you believe in this kid of thing), but leave it to humans to destroy it in less time. I read that human trails started this week in the USA, vaccinations given to a group of participants willing to risk their lives. This is a very brave & self-less act where they will venture into a medical unknown in the hopes of discovering a cure. Yet, I fear that in this hasten move to find a treatment we may be lead to a precarious path of uncertainty. Will we be risking our lively hood, health balance, or humanity in total?

Jehova spins tonight

Granted this sounds speculative in many ways. After all, we've surged thru many dangers as a people for millennia. From wars to disease, we've come thru spectacularly as the overlords of planet earth. However, this feels different. And, as someone who has experienced hallucinations and horrible mood swings during previous cancer trails I can't help but think of what side effects may manifest with these hastily Corona vaccinations. Shit, for all we know we'll see a surge in a human crisis as we fearfully deal with this latest pandemic. Just like the "Crossed" plot line, we"ll become feral savages.

Thanks Steve Jobs...

After all, people are fighting over toilet paper. TOILET PAPER...

Often I wish to quit this whole treatment thing. Everything is such a grind with my family, with my work, with my own creativeness. I find myself in a perpetual "pulling myself together" mode, only to discover that at the other end everything-is-beginning-to-not-matter. What I mean is that I've lost most of my reasoning on why I should continue to fight.

I've been in this situation before, many times thinking about throwing in the towel and refusing to go-on. But this is becoming a conscience choice, which makes it an unbearable thing to actually do. Embedded within my physique is the character determined to do what it takes to protect his family, his values, et al. But this means nothing when it is done at the cost of your children's peace of mind.

Peter, where art thou?

The latest CT and MRI scans did little to impress the value in partaking the past two months in the TPX-0005 clinical trail. The chest images showed real progression in length & metabolic register. Also, the brain demonstrated swelling due to one tumor that measured larger that the previous scan (November 2019). Needless to say, January was a huge cluster-fuck of a month in terms to my health.

January 2020

Based on these results my medical team (a combo of UCI/Cedars-Sinai/Los Angeles Clinic specialists) suggested consulting with a Neurosurgeon & Pulmonologist for further opinion. As it stands, I could get the brain lesion treated with radiation to keep that in-check, however this would bump me out of the trail. Plus, the lung may need to be biopsied to check for any genetic mutations  so I have that to look forward to too. I figured something like this would happen, but not as soon. Fuck, I just barely started this drug and adjusting to a new routine.

Understandably I've become quite bitter, but not as so bad that Dexomethasone didn't help. I was prescribed this horrible steroid to keep the brain swelling at bay, and unfortunately it has altered my mood to where my kids are experiencing its full effect.

I feel like I'm at an in-pass at the moment, stuck between an on-going train of medications for longevity versus the natural unfolding of life sans-meds. Even then, there is no guarantee that this "last line" of targeted treatment will work based on the latest imaging results, so I'm fuct both ways.

I expressed to my wife the desire to be buried with some brass-knuckles in the hopes that I can use them when I meet my maker.