Thursday, January 18, 2018
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
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
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.
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...
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...
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
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