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.

Warrior

I am a Warrior.

I will get through the storm.

I will show the storm who's boss.

I will show everyone I am stronger than all things that have hurt me.

I am stronger than my past.

I am stronger than the challenges coming in my future.

I will tell myself: I don't invite life's challenges, but I don't back down from them either.

I know we all face tough times.

I know I am not exempt from life's struggles.

But I know I AM STRONG.

I know THIS WILL PASS.

I know there will be BETTER DAYS.

But ONLY if I KEEP FIGHTING!

LIKE A WARRIOR!

FIGHTING WITH A MY HEART!
The heart of a LION!

The strength I have is like no other!

I AM NOT a survivor. I AM A WARRIOR!

I don't survive, I THRIVE!
I can do this, and I will get through this!

Warriors are built from the struggle,
formed from pain,
strengthened by adversity.
Embrace your challenges and push through them,
like the Warrior you are.

I am stronger than my Past,
I am stronger than the challenges coming in my future.

THE STRENGTH I HAVE IS LIKE NO OTHER!

I am not a Survivor, I AM A WARRIOR!
I don't survive, I THRIVE.
I can do this, and I will get through this!

I make the best of bad situations.
I see the opportunity in the struggle.
I grow strength from my hardships.
I am thankful for my hard times - they make me stronger.
I am thankful for the pain -  it makes me raise my game.
I am grateful for the worst of times - it ensures my story will be a great one.

From Zero to HERO.
From Nothing to SOMETHING.
From the Bottom to the TOP.

HERE I COME!!!

The hindsight of 20/20 vision

It's Thursday, January 2nd, 2020 AD.

Noon-time at the UCI cancer center where I'm scheduled for my 4th week check in. It's been 28 days since I started Phase II of the TPX-0005 clinical trail and it's been quite an experience. Now, before I start rambling about the pros & cons of my latest drug exploits I figured I'd give a quick recap on how I eventually got here:

Not mine, but cool idea

August 2015: Slight symptoms in my breathing.
September 2015: Visited my PCP and was told I had the flu (flu shot was given).
January 2016: I began having hip pain, PCP said it was sports related injury.
April 2016: Ongoing hip pain prompted referral visit to arthritis specialist. Nothing noted.
May 2016: Chest x-ray (finally ordered by my PCP after I coughed upped blood)
May 19th, 2016: "Hello spot!"
June 2016: Bronchoscopy, mediastinoscopy, biopsy and all sorts of other related procedures.

June 28th, 2016: "You got cancer kid..."

July-November 2016: Chemo and Radiation.
December 2016-October 2017: Immunotherapy. (Stopped due to progression.)
November 2017: Brain radiation (6 mets). No drugs.
January 2018: Dx with ROS-1 mutation (affecting 1-2% of all Lung Cancers). Started Xalkori.
October 2018: Apparent tumor spread in my brain. Was referred to Lorbrena clinical trail (phase lV).
November 2019: Apparent tumor spread in my brain. Was referred to TPX-0005 clinical trail.
December 2019: First dose taken.
January 2020: Whallah!

At least the road's paved (I have insurance)

As you may note, there have been quite the many steps taken in the past 3 years to combat this disease. And, if you have been an avaunt reader of my lil' blog you'll recognize that each step was met with its own unique challenge. While the thought of giving-up has crossed my mind (many of many times) I would not be humble enough to pat myself in the back, or toast the achievement of living this long while maintaining my sanity. Just like the crack in the Liberty Bell defines it as "The Liberty Bell" I have yet to have my cracks define me as a cancer patient, much the less a quitter. But I am starting to feel battle fatigue.

I also have a crack.

The first week on TPX was met unremarkable. I was told of the potential side effects, mostly dizziness, and was prescribed a plethora of additional pills to combat these. However, by week two I began experiencing nephropathy throughout my body. It was extreme pain everywhere that no over-the-counter meds could stop. For the first time in this cancer broo-haha I felt agony and fear, and after two days of suffering I finally reached out to my med team who prescribed Gabapentin for nerve pain. But it didn't work completely. I figured that my body was still adjusting to this new protocol and that I needed to "man-up" and push through, but it got me. Got me bad.

I was finally prescribed a narcotic, legitimately becoming a part of the opioid epidemic in the US. Granted, I did not abuse these. I didn't even want them, but the pain was just too much. Eventually, this subsided some-what and left me feeling like I had a really bad sunburn (bowlegged walk). This was manageable and was elated to get some relief as I went onto week three, where the dose was doubled.

My favorite doubles

Now things got interesting. I began having cognitive and memory issues, which I attributed to the med entering my brain. Also, the dreaded dizziness started to manifest and I went from happy-high hippy to sad-drunk schmo, compounded with roller-coaster emotional swings. A true shit show, but hey! I'm alive...

now you know

It's now January 10th, 2020 and I've been in Cycle 2 of Phase Two of the clinical trail (week 6 overall). CTs & MRIs are scheduled by EOM to check on physiological response, and I feel neither excited nor nervous. I'm pretty much taking it day by day with minimal expectations, but I also feel hollowed-out spiritually. Still, I enjoy the comfort of my friends & family and the creative zest that lingers, but I do miss the motivational excitement that once sprung within.

sigh