Cancer who?

Holy fark!, It's been a minute since my last post, but I do hope you lovely readers are at the tail end of the pandemic. In my case, it's masks galore for obvious reasons. Still, it's nice that I can have my Old Fashions in company of the same regular bar-flies I would interact with two years ago. Nonetheless, the proverbial cancer Sword of Democles continues to sway above my head like a goddamn E A Poe Raven. Glory be.

'sup bitch

Yet here we are. Almost six years since I was originally diagnosed. Seven years since I first felt symptoms. Add the genius and ingenuity of scientists who have researched ways to mitigate and extend not only life, but livelihood for anyone diagnosed with cancer. It's amazing to be a part of this trend: 5+ years survival rate, with ongoing study and exploration on how to help folks beat this horrible disease. It's truly amazing! I feel honored to have contributed to this research by participating in three clinical trials. And really, all I am is a case number in all of those studies, but I am also the same ol' MexiCAN, imbibed with furor, beating the odds that were unimagined 5-10-20 years ago. It makes me proud.

Cancer ain't shit, vato

Still, the road has been quite bumpy. One day things are stable, the next day you're at death's door. Really, I've been told I've progressed 4 fucking times. Yet, all these times it's been a misreading: Mostly, by UCI radiologists (who seem to be in their senior year of med-school), or an Oncologist that has no fucking idea on how to accurately read scans. It's taken 2nd & 3rd opinions to get accurate results, and even then, you have to listen/trust your own body. Now, I'm experiencing "exposure syndrome", in that I've developed a scab that's made me immune to receiving bad news. It's a sweet & sour spot to be in, and lately I've been taking this cancer-thing all in stride. Cancer has become my own private Idaho.

Hey!

I'm 27 months into the Repotrectinib trail, and things are stable. I'm a healthy 55 year old, post pandemic, daddy-bod, father of two glorious Indigenous American/Bulgarian girls with fire in their blood. I'm echoing Prometheus in his quest for knowledge, while risking everything in the hopes that, someday, clinical patient #2101-2005 will have made a difference.

I am Alejandro. I am Duke.

VAXED Poderoso

I've been reflecting on a lot of old memories while under quarantine. It's funny how all the dust that can settle has settled these last 15 months, only to help unearth old fears & circumstances that are woven into the fabric of my adulthood. I finally realized (accepted) this past year that I am an adult. A grown ass man with a dad bod, creaky joints and thicker reading glasses. I wear PJs with dress shoes when going to the store; wear compression socks with sandals; pull a muscle getting jeans on. It's depressing.

Long gone are the days when the party would start at 10 pm (12 am in Vegas), or Bar hoping at joints located 20 miles away (hello Dresden). Even the mirror ball tends to get too bright. Sigh.

All that said I still consider myself fortunate to be around. Honestly, I didn't think I would last beyond 2020 and in many ways never planned goals for myself other than surviving. Now, I find myself in an amusing 2nd midlife crisis where I am trying to define what I should do in the next couple of years: personally & professionally. Since my original diagnosis in 2016 I sort of "gave up" on many goals and focused only on what was to help extend my life. Cancer has a way to help a person define priorities, so that Austin Martin & Career as a Jewel Thief had to go. Nonetheless, I look back with irreverent fondness at the path I've traversed the last five years and humbly pat myself in the back.

The TPX-0005 clinical trial, or Repotrectinib for you dandys, seems to be working wonders on my cancer-guest. As if I needed more of an excuse to go on. But seriously, I am very lucky that my physique has responded good to this particular drug and has given me an outlook beyond an annual goal. I've regained the same stresses as a regular "American Male" would have at the age of 54. Now I’m planning all kinds of shit that are really circumstantial to a man my age, but it's nice to not have to live week-by-week, or month-by-month as I did last year.

Time has certainly flown by as has slowed down these last 5 years. Kind of like the flu: cold & hot at the same time. A perpetual cold sweat, or hangover. It sucked. But, at the same time it rocked, in that I was able to face my demon and live another day.

I found a strength I never knew I had (nor deserved). But it's sweet to be able to recognize that.

I am good.

Salud!

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.