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:

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!