Friday, May 4, 2018

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.








Monday, February 19, 2018

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. 



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!

Wednesday, January 17, 2018

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

Monday, January 1, 2018

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