Cancer Man IV

Jeez. I know it's been a while, but a lot of shit has transpired since the last time I actually wrote in this diary and, honestly, haven't felt the need to share. But I'm listening to the Xanadu soundtrack right now and I got all toasty inside.

Join me?

The last time I wrote anything regarding my health situation was June 2018, and things were pretty much stable. Continuing my ongoing pill-popping routine of Xalkori & Keppra. Things were swell as swell as they can be with swollen ankles, blurry vision and fatigue. But amazingly, I was successful in establishing a routine while under this particular targeted treatment. Easily fitting back into the normal life of a typical American male pursuing the American dream: a job, a home, a 401K, a life... It was sweet to stress again about normal things.

Regaining my focus and dusting off some old life goals with the expectation that I may fucking be able to beat this thing. But, as with all people with a plan, God laughs.

About nine months into Xalkori I got another scan and brain MRI. Our old friend in the brain showed continued improvement though there was a small speck in another side that warranted further investigation. In addition, the CT scan of my chest demonstrated a familiar stain that has appeared before. I figured what was coming and just told my Oncologist to schedule the PET scan. It’s a standard thing for me to receive radioactive material every quarter just to check my innards. 

Thank goodness that my in$$$urance pays for these damned things as they are not a standardized method of cancer detection. Let alone outside of the U$ where PET $$$cans are not given, even in areas where “socialized” healthcare is available including Canada (at least that’s what one Kanuck with cancer told me).

Yet, these $$$cans are the ones that have been most successful in detecting my tumor activity with immediate results. However, it does take technicians a couple of days to read the images, which now leads us too:

November 5th, 2018:
Onc: “Your PET scan results show potential mild metabolic activity”
Me: “Is the cancer back?”
Onc: “not too sure since the scan tech also said to not rule out infection in your lung”
Me: “well, what about the spec in my brain”
Onc: “nothing to worry about now, we can wait to see if it progresses and then we can treat”.
Me: “wait til it progresses...? You mean grow!?
Onc: “Yes. Or we can give you brain radiation again, but just that spot.”
Me: “Fuuuuuuuuuuuuuuuuucccccccccckkkkkkkkk”

Onc: “You’ll probably have to stop taking your current medication. But there are clinical trials you can apply too”.
Me: “Fuck doc, so I’m at the end of my rope for cancer meds?
Onc: “Don’t be discouraged. There are some good alternatives”
Me: “where? Alaska?”
Onc: “Actually Huntington Beach”

In the end no brain radiation was needed, plus I lucked out and got on the tail end of a clinical trial that has shown great promise in treating the body and the brain.

But there are the side effects. Always the side effects. I’ve been on it for six weeks and will get scans early 2019 to check how things are going. And yep, I am scared. And scarred too.

I often wonder if it’s best to live a long life dealing with miserable side effects or a short happy life that unfolds naturally. There are days when sunsets seem logical.
Meanwhile...

Cancer Man III

I continued to evolve my artistic voice as the years rolled on. Lucky enough to finally get my parent's blessing, and their funding, to attending Graphic Design classes in Mexico. Painting on walls was not considered the fine art it is now thanks to the likes of Fairey, Basquiat and Banksy. Yet, I figured I would give my art spirit the voice it desired by enrolling in something where I can secure a professional degree, and in a sense, give a degree of comfort to my folks in that I could potentially make a living out of this.


I sucked at it. Graphic Design had its unique sense of discipline and it was not what I expected. There were a lot of rules that an artist needed to adhere too that made the craft sterile. I didn't get that overwhelming sense of God-like satisfaction when creating something as I did when tagging those walls. But I ventured on, ultimately becoming a mediocre designer that ended up creating advertisement layouts for newspapers at a boutique agency in TJ. My daily routine would begin with a cup of coffee and a Marlboro red at my desk where I would write copy, print it, cut it down to size with an x-acto and paste it on an art board. Advertising is a fast paced environment where we were always under the gun to get the layouts approved by the client, then hand delivered to the newspapers that would run them. Deadlines always loomed over us and we looked for ways of cutting corners to increase our production. One of these was to use 3M spray adhesive (instead of rubber cement) on a make-shift cardboard backing where we would place the images that would eventually be pasted on the layout, never really thinking about wearing protective gear like a mask, glasses or gloves.



Every designer in the studio used this method, freely spraying a shit load of glue chemicals throughout the office without consideration. Breathing it all in without thinking of the consequences...



Oh Fuck.






tbc

Cancer Man II

Looking back at my life I realize that I've lived like a pinball. Not really having a destined path as I rolled around, but ultimately being propelled in a certain direction after "bumping" on a circumstance that came across my way. Subsequently reacting to this event and adapting as best as I could to flourish. To succeed. But I guess this is what's called evolving. Maturing. Growing a pair.



As a young kid in Mexico I've always dreamed of working with art in whatever capacity it would be. But this was a huge pipe dream and really did not expect this to happen. My parents were practical minded, and for them art was just not an endeavor that would take me anywhere. Much less making a living out of it. I buried this pipe dream and took a safe approach by studying Accounting where I eventually worked in a bank for several months. I wound up quitting this shit show as I hated it, but still needed to make some legal tender. So, I started cleaning engine parts in my Dad's forklift shop. I went from suit & tie to dirty overalls overnight. Yet, the art spirit kept pestering me. And as much as I attempted to drown it out I finally succumbed to it by finding an offbeat outlet from which it can express itself.



Early in my teens I was exposed to graffiti art and was fascinated by the creativity that was being done in New York. It lit a certain fire within me where I realized that art wasn't just limited to paintings hanging in museums. All the more surprising was realizing that these artists were not paid for their work. It was simply their deliberate sense of giving expression to what they had conceived within their mind. A temporary record of their thought that ultimately would disappear behind a power-wash. I began to sketch during my breaks and after a while started tagging the shop's walls. Originally, I did this to impress a cute girl that lived across the street, but this was a defining moment for me.



Adding color to that cinder block wall was an awakening. The creative spirit took over me with an overwhelming sense of peace, calm, and happiness. Time stopped. Nothing else mattered. I wept silent tears of joy upon realizing what defined me at my core. Creativity & Expression.



This eventually faded once my break time was over and it was back to cleaning parts for the day. And, as the weeks/months rolled by this dream was buried again. Power-washed by my sense of duty in needing to be realistic when it comes to a job.



Yet, my pinball continued to roll...



tbc

Cancer Man Part I

Some of the hardest moments during this journey is dealing with my family. The burden of being a family man of two young kids while battling cancer can be overwhelming at times. And not just due to the side effects, but to the daily stress of having to satisfy their needs while I try to meet my own. Also, having my wife stuck in the middle of this whole thing adds to the grind. I feel an unending sense of escape. The desire to leave my home so that I can meet my needs as they come. To go out and heal, or die, on my own.



But I stay. Perpetually building my endurance in tolerating the ever increasing struggles that comes with family life. The brutal grind that defines every American male seeking the American dream. Shit, my life-long dreams seem to not matter when compared to the ultimate goal of surviving this disease. We are told that cancer is a major pain in the ass, but it's not until we personally undergo it that we really know where the pressure points are.



It is a general boiler plate experience when dealing with chemo and radiation. All of the side effects that come associated with them is just a normal physiological response of your body, so you just deal with it. But when it comes to the mindset: that deep-down bedrock you eventually reach when you undergo cancer can thin out your layers of self-identity. And that in itself is scary as you peek behind the curtain to see what is revealed. A black hole of emptiness as you realize that much of your life was lived behind masks. Like Frankenstein's monster, much of my psyche was made up of different identities that I used to hide my true self. Or perhaps this is my true self: a chameleon. A self preserving creature that blends into its surroundings, adapting as it moves from one environment to another. Or maybe I am the cancer. Ultimately evolving into the mutation that will eradicate these masks by condensing them into the single, burnt-out version that I am.



Fuck, that sounds depressing...

A dear friend of mine asked me last week what makes me happy. I couldn't answer her.

tbc

Donuts with Sprinkles

Growing up Catholic meant growing up with guilt. A person would be born still bearing the "original sin" and carry the burden of unworthiness. At least that's how it was for me. I often felt that my existence was only validated when I would sacrifice my desires for the wellness of others. That I should focus on the well-being of my neighbor before my own. Being the perpetual good-guy in spite of the shit that would be thrown my way. In essence, turning the other cheek.

Now, I'm not attempting to get a rise out of those who are religious. After all, I studied some Theology at age 19 when I enrolled in the Seminary. But, as a kid attending St. Mary's elementary this message had a huge impact on my life. The guilt that was bestowed upon me by my moral educators had a profound effect on how I would approach life as I developed into a Man.

A simple example of this was a moment during Junior High with a group of friends. One of them had offered a choice of pastries he had just purchased. It was three donuts: one plain, one glazed, and one with sprinkles. As I was reaching for my favorite multi-colored pastry the pangs of self-guilt began to ring throughout my mind. My thought was that I was unworthy of having my desired choice and that my other friends were more deserving of this deliciousness. I opted to grab the plain donut, eating it in silent misery as I saw my friends enjoy the others.

Yes, it seems pretty lame but this sensibility echoed throughout much of my young life into adulthood. I would voluntarily step back and allow others to reap my desired rewards, regardless of whether they would reciprocate or not. A deep feeling of resentment  began to grow within me, causing a bitterness that lead to a bad self-image. This is important to take note of since it's this awareness that I initially faced Cancer with.



When I was first diagnosed there were the immediate questions of "why me", followed by questions of "why not me". The overwhelming sense of deserving the cancer permeated my thoughts. That this was my punishment for not following thru with my Catholic upbringing in sacrificing for others. This really sucked as I felt beaten before I even gave myself the chance to fight for my life.
 

Realizing that I did not want to put my family & friends thru grief I had opted on leaving LA and hospice myself in a discreet location where no one can see me wither and die. But, as time continued to unfold I began to dig deep into the cause of these feelings of unworthiness. Analyzing all the moments of my life where I would give up my feelings in "service to others":

-Giving up the little league team since I was a horrible player.
-Taking the blame for breaking a window at school.
-Making up bad-deeds so that I had something to confess at Mass.
-The donut incident.
-Doing someone else's art homework.
-Taking the blame for the stolen porno tape shown during a Xmas party.
-Being Duckie.
-Giving up a good lead for the job I wanted.
-Helping a friend get the girl I liked.



It was quite an interesting road to relive and identify all the times that felt I cheated myself. But more importantly, realizing that the actions I committed during these events were more than just doctrine instilled by clerics. They came as heartfelt gestures and my natural sense of servitude towards others. And it was nice to finally come to terms with being what I've always been: a good-guy.


The scales of guilt peeled off soon after that and I gave myself permission to heal. To accept the help of my friends when offered. To accept the love of my family. To be the Hero to my daughters. And that, in itself, is accepting that Sprinkled donut and eating it with a child-like delight.

Luv

Don't just survive...

Whether the Storm

A ship is safe in a harbor, but that is not what ships are built for.
-John A. Shedd

SOAR

You are meant to go beyond your comfort zone. SOAR!!!

The Sun is always there, even behind the clouds.

The world is alright with you!

Awareness

I'm beginning to produce a series of digital postcards to raise cancer awareness. many don't realize that this disease develops in a variety of genetic mutations and affects different parts of the body. Regardless of gender, age, or race, cancer rears its ugly head when least expected.

Listen to your body. it does not lie.

Early detection is key, but there are so many medical breakthroughs that I believe we'll see a cure within our lifetime. Until then, let's remain vigilant for those that have battled before, those who are battling now, and all of us who are Cancer Warriors!

With much Gratitude, Love & Grace.

New Beginnings -

I finally took the first step in creating the support network needed when I was first diagnosed in 2016. Many Cancer related forums seem to be more informative, which is good, but much of their content can be up to five years old. Cancer treatments are evolving extraordinarily fast, especially in the early detection stage. But more often than not, some of these sites can be overwhelming to a newly diagnosed patient. They can be chock full of "do-this or don't", ads, and misinformation. I would feel exhausted after visiting certain sites. Discouraged and ready to quit. 

But I realized that part of the healing process is not just physical, but spiritual. Not necessarily in the religious sense, but mental. The attitude we have as we carry this burden; the fear that stops us from asking more about potential treatments; the mental anguish in not knowing what to do; the "why me" that echoes in our head.

All this served to burden my healing process and I believe that by finally accepting my health situation I was able to let it go. What we resist persists, and I made up my mind to find the solution to the weariness within. In essence, not just going thru it but growing thru it.

So I finally took my first step towards healing by implementing my creative skills to inspire others.

Not in a loud-shouting way, but in the quite whisper of reinforcing/uplifting messages that people can benefit from. We all want to find a cure for Cancer, especially Pediatric. Until then I hope that some of my postcards inspire others to continue their journey with dignity, encouragement, and loving support.

You are a Warrior.

Slip the Jab!

I've been on Xalkori for about three months and boy is it a game changer. At about week 6 of the treatment (March 9th) the PET scan/MRI results were astonishing...



The lung tumors that were originally reported in the previous PET scans were gone. The bones where the tumor had metastasized (sternum, lower rib, hip) are healed. It was especially fantastic to see the upper right hip completely lacking any cancer activity, now showing calcification (healing) in the area where the lesion was. This is something I had not seen in the scans from the previous two years. The tumor always appeared smaller, but active. This time it was gone.

The brain MRI also had some very positive results. The main tumor was reduced significantly and the smaller ones are gone.

I was overjoyed to hear this news, but still cautiously optimistic. My body was healing, but not necessarily cured. The Xalcori med is effective for a certain amount of time, yet my Oncologist has mentioned a few patients that have been on it since it was approved by the FDA (over three years). However, I have been feeling much stronger, confident, and joyous in spite of the continued side effects. My perspective on life is much more in-focus. I finally found that sliver of light at the end of the tunnel.



It's been quite the path the last past two years since the spot in my lung was discovered. A hard path where I was forced to face much of my fears. Most of this journey was fighting my own negative voice. That deep down drawl where all insecurities reside and only surface to discourage you. To make you quit. The guilt, the anger, the self-hatred. We all battle this in some form or other, but this was an amalgam of low self-esteem that bubbled up after years of being buried within. The constant feeling that I brought this on my own. That it's God's ultimate punishment. That it wasn't enough to be at death's door but that I also needed to suffer. Waste away physically & mentally while my family/friends bare witness.

But I was wrong.
Dead Wrong.



I have a new found respect for myself. A self appreciation for not giving up. Not just for my family & friends, but for me. I was hard on myself for most of my life, thinking I never measured up to - whatever. But I have reason to go on, for me. Reason to continue fighting, for me. Reason to continue loving, for me.

I've watched a lot of empowering videos that have helped me throughout my journey. From Joel Osteen, Lester Brown, Eric Thomas, Jim Carrey, et al. But the best came from the Rocky films. Listening to these clips daily would build me up, give me hope, and restore my Faith.

This clip is particularly special to me. It would help visualize my elderly self coaching my current self. Visiting from my future to encourage me, give me hope, and say he believes in me. Everything else falls into place from there:

Rocky & Mickey

I love you all.

Pill Popper

It's been 30 days since I started on the Xalkori treatment and I can't really tell if it's working. But really, the only way to know is to get CT & PET scans to determine if the cancer tumors have been affected in any way. However, the side effects are real and I have been feeling these in full force.

The worst was the itchiness and rash that blew up around my chest/back on day 12 of the treatment. The nurses at the Cancer Center said that this was normal as my body continued to adjust to the meds. But add in the fatigue, swollen ankles, muscle weakness and nausea and these side effects are compounded two-fold. Yep, the last month was a pain in the ass. 

Gives new meaning to "I wanna be a Flintstone"

Mentally I am drained too. Just living a life of popping pills to keep me alive is annoying, but I guess that's the main objective. To continue to live a life of a working family man with the regular ups-downs, commutes, and general bull shit.

I'm just tired. Really fuking tired. And I need a drink.

Btw, this is what $200 looks like:

or $12,000:

Yay Capitalism!

addendum....

Be Grateful for what you got.

Finding reason to it all

The mind fuck is real...

Getting a catastrophic disease is much more than the physical bodily reactions that come with the pain & discomfort. My mental stability seems like it's reaching a tipping point to where I just want to stop "fighting". And not that I am fighting anything major. I've seen many cancer patients at Ceders that look like they've been thru the grinder (and then some), yet I still am maintaining my cherubby look thanks to the steroids & anti-seizure meds. Still, I keep convincing myself that all of this suffering is actually due to a reason. That I am going-thru-this to evolve into a better person that will eventually help the world, or bring forth some sort of positive result thanks to the trails of pain I've been thru. But this all seems like bull-shit. 


As humans we tend to desire some sort of justification for what we go thru. Whether we deserve it, earn it, or simply say it's "God's-will", we tend to feel that there is some sort of energy that guides us into precarious situations that are meant to teach us something, and that's how I've been feeling these last 18 months. Especially the last three dealing with this brain tumor metastasis, brain radiation, and clinical trails... but now it looks like none of this even fucking mattered.

Back in October when it was discovered that the Opdivo was no longer working it was suggested by another Oncologist to get a new biopsy of my tumor to determine any new mutations. This would help determine how this cancer would be evolving, and hence discover what would be the best trail available. Well, the biopsy did not happen, so November-December-January was spent mostly treating the brain tumors, getting roid rage and being mind-full of suicidal thoughts (med side-effects)...

https://csn.cancer.org/node/308922

But last week, my trail Onc decided on having me take a new blood-test that was state-of-the-art to check for cancer mutations in my blood. Apparently, it has upwards of an 75% positive results in identifying the cancer and its current state.

https://newatlas.com/cancer-blood-test-dna-mutations/50936/

Well, I got those results yesterday and it was deemed that the cancer I have is a rare form of non-small cell LC (about 1% of lung cancer patients have it) called ROS-1, AND that there is already an FDA approved pill to treat it.

AN FDA APPROVED PILL TO TREAT IT...
Xalcori Pill


My Onc continued to state that this pill has about a 65-70% success rate in cancer remission for about 14 months, which means I may actually catch the last season of Game of Thrones, but Jesus I can't help but be irritated over this latest news.



Sure, leave it to me to be a curmudgeon and look a gift horse in the mouth, but why the fuck did I not get this cancer blood test done back in October? Having gone thru all of this bull shit, being rejected for the trails, getting on the steroids and putting my family thru all of the aggravation due to my mental/spiritual sanity? What was the REASON for all of this?

FUCKING SIGH...

Yes, I am comforted that I may not have to go thru any trails and put my body into any form of precarious situation. But one thing that was counting on was that insurance would have covered all expenses 100%. Now I have to see if this new pill is covered (or what my copay may be) since the cost could be within the thousands per month. Even Chemo/Immunotherapy sessions were up there, about 50K per month. Hey, in hindsight I've reached my goal of manifesting One Million dollars!!! Except they went up my arm.



Yes, yes, yes... better news all around. But the mind fuck is real...
So is this:

https://www.frontiersin.org/articles/10.3389/fonc.2017.00208/full

Bringing it home...

October 18, 2017:

Onc: "The latest PET scan shows that the tumor has returned to your upper left lung lobe, and it's also spread to one of your lymph nodes & sternum"
Me: "Fuck..."
Onc: "Unfortunately we'll now need to stop the Opdivo since it seems it is no longer effective in treating your condition"
Me: "What are my options now?" More Radiation? Back to regular Chemotherapy?"
Onc: "Well, we can't really go back to standard Chemo since you've been on Immunotherapy for the last nine months. And Radiation is only optional if you have major pain, and it wouldn't really make a difference... perhaps a clinical trail..."
Me: "Fuck..."

I left the Oncologist's office defeated. Here I was expecting better results after a good length of time on a med that seemed to be working. Now I was back to square one. I called Polly and wept. It was as if the whole battle I fought the last 14 months was worthless. The fatigue, the irritability, the side effects, everything that I had done to my body was worth nothing. I got myself into a semi-depression...

The next day I flew to Vegas for a scheduled company trip that I had not planned attending. But under the insistence of my wife I decided to go and cheer myself up by going on an all-night bender. And it worked, for a bit.

I returned home feeling in-limbo, but ultimately contacted the Clinical Trials department at Ceders, as well as City of Hope. Up until this point I had been depending on my Oncologist to determine the next steps, but now I was to take the bull by the horns and determine what is available to me for my current status.

And by the end of October I luckily was allocated a spot for an upcoming trail at Ceders. Good news I thought! Since I had been without any sort of meds for almost one month and was getting concerned that the tumor was continuing to spread. And then...

October 28, 2017. Out of the Frying pan and into the Fire:

I was visiting my parents in San Diego when I began to feel a strange sensation in my hands as if there was a loss-of-control, a weakness.  I shrugged it off thinking it was withdrawals after being one month off of Opdivo. Now, I had not revealed to my parents the latest results from the PET scan, nor did I say I was heading into clinical trails. Hell, I hadn't even mentioned that this was a malignant cancerous tumor all along. I thought by keeping them from the seriousness of my illness I was protecting them from any worries about my health. Then the Pandora's box exploded:

All of a sudden I felt the left side of my face go numb. "Holy Christ!" I thought. "I'm having a stroke"! I was quickly transported to the nearest ER, where I was given the standard stroke-test (pulling fingers, repeating words, checking vitals, etc). It was determined that I had not suffered a stroke but it would be necessary to get checked and ensure what was going on. With all the confusion, I broke down and finally confessed to my folks the sudden down-turn in my health. The results of the latest PET scan, the tumor spreading, the clinical trails...

October 28, 2017. Out of the Fire and into Brimstone:

Still in the ER, I received a CT scan of my Chest & MRI of my brain to determine what was the cause of the numbness felt earlier in the day. The results said it all: The tumor had spread into my brain, and was causing swelling in the areas where they were colonizing.

Me: "They...?"
ER Doc: "You have more than one tumor there..."
Me: "Fuck me..."

And so the journey into this madness not only continues but it's taking me deeper into the rabbit hole. The last two months have been by far the worst of this whole cancer experience after it was deemed I had 6 tumors of various sizes in my brain. This, unfortunately, made me ineligible for any clinical trails. Plus, I would need to get this tumor situation resolved before I would be considered a candidate again. So, Brain Radiation therapy for a week...

Add on top of that a steroid prescription to help reduce the brain swelling and you have a very moody and jittery Duke. Now, as we close 2017 I've still not heard of any certainly of my participation in any clinical trails yet. The PET scan I received a couple of weeks ago yielded better results in terms of the tumors being reduced, but it may take upwards of 4 months for these things to be completely healed. That would mean almost 6-7 months total without any form of medication since the Opdivo was stopped in October. Plus, being on this steroid has certainly changed my mood as well as my looks. I'm feeling pretty low at the moment, but in hindsight I guess many battles have their ups & downs.

In hindsight, 2017 offered me a look into what steel I'm made out of, especially during my low moments. I've faced my own mortality and have accepted it, albeit I still worry about my young family and their well-being should I pass sooner than expected. But realizing that HOPE & FAITH is all we can cling too is enough to get me up again and continue the good fight. That and good friends that have encouraged me along the way.

To them I say a heartfelt Thank you.

And too you, dear reader, I wish you a prosperous 2018.
The Big Casino