After receiving the AVASTIN, the med my Oncologist suggested (the bleeding eyes one) I had a nasty migraine that lasted about 5 days. I had expected the typical 2-day chemo side effects but I had never had a migraine that left me bed ridden for a week. Plus I started coughing up blood again. The Oncologist ordered a CT of my brain & my lung that ultimately resulted in a negative result for the former; however for the lung:
Sencha
•Onc: "Alejandro, your chest scan shows progression of your tumor in your upper Left lobe. Are you having problems breathing?"
•Me: "No, just the bloody mucus & cough"
•Onc: "I'm going to refer you to a Pulmonary Specialist. We may need to place a stent in your lung to open up the airway"
•Me: "But I can breathe fine. How much has the tumor spread? Can it be surgically removed?"
•Onc: "Ahem... well, it's gone further into your upper lung and HMO won't approve any surgery for 4th Stage patients. Let me go ahead and order that referral".
•Me: "Ok... but are you sure the brain came back negative... My head feels like it's in a blender. What can I take for the migraine?
•Onc: "Your brain scan came back normal. Just take more Tylenol."
Brain normal, THAT's an understatement...
By this point I was very frustrated with my medical team, especially my Oncologist, and proceeded to inquire about getting a 2nd opinion, but it would't be that easy since my medical insurance at the time was an HMO and I would need to get approvals beforehand. Especially if I wanted to see anyone outside of my network. City of Hope was charging about one thousand (out of pocket) for an initial consultation. There was another place in Torrance that was recommended, but it's in Torrance. In the end, though, I stayed with the Big Casino after I scored a consultation with their Lung Cancer Clinical Research Director. And for the first time, after six months of my original diagnosis, I understood exactly what was going on within my body.
The Clinical Trail Onc proceeded to explain the type of cancer I have, how it spread, and followed up with showing me all the scans I've had and how things have improved/worsened. I got a better grasp at how this disease was affecting my body, but more importantly how it was not. It was fascinating to see how my hip bone was healing by creating new-bone around the tumor. Also, I was introduced back then to the Clinical Trails department and was offered a chance to be a part of a trail. One of my biggest regrets was not jumping at this opportunity then, especially after he talked more about the latest lung scan.
He concurred with the results that the tumor had spread into my lung and showed me on his screen a huge blob emanating from the center of my chest and spilling upwards into my upper long.
•Me: "Okay... what now?"
•Clinical Trail Doc: "I suggest that you follow up with your Oncologist's instructions and see the Pulmonary Spec. You should also have your biopsy tested for mutations as this will help identify the DNA make up of the tumor should you decided to get involved with trails."
•Me: Can I kiss you now?"
I left his office reassured that there was still hope in getting myself treated, though clinical trails are no easy road to success either. There is a lot that goes behind the scenes before a patient meets trail requirements, and then there are the unknown side effects and monitoring by the trail team during each phase.
But in the end none of this mattered...
My Oncologist did not follow through with the Clinical Trail Doc's recommendations and proceeded to stick to her plan of having the Pulmonary Specialist put the stent in my lung while she came up with a new Chemo protocol. I argued that I wanted to get my biopsy tested, but she conveniently brushed this away by saying that the HMO would not approve the cost.
So... for the third time in 2016 I was laying on the surgery slab at Ceders-Sinai, waiting to get this stent inserted in my lung to aide my "perceived" lack of breathing (even tho I did not have any breathing issues), and all due to the cancer tumor spreading.
And just like that episode of "Breaking Bad" I mentioned earlier, where it was discovered that Walter White's tumor did not in fact spread, but that the blob was actually radiation fibrosis (scarring from radiation treatment):
IT WAS NOT THE TUMOR IN MY LUNG THAT SPREAD BUT WAS ACTUALLY RADIATION FIBROSIS.
In the end:
• I did not need the stent after all, there was no blockage in my lung.
• They did not see any evidence that the was a tumor alive, only radiation scarring.
• I was given a "lung-cleaning" for shits & giggles.
• And yes, the Tumor had not spread.
How the fuck did we go from That to This? Especially after three fucking doctors saw the same scan and came to the same conclusion?
Oh yeah...
•Me: "Ok... but are you sure the brain came back negative... My head feels like it's in a blender. What can I take for the migraine?
•Onc: "Your brain scan came back normal. Just take more Tylenol."
Brain normal, THAT's an understatement...
By this point I was very frustrated with my medical team, especially my Oncologist, and proceeded to inquire about getting a 2nd opinion, but it would't be that easy since my medical insurance at the time was an HMO and I would need to get approvals beforehand. Especially if I wanted to see anyone outside of my network. City of Hope was charging about one thousand (out of pocket) for an initial consultation. There was another place in Torrance that was recommended, but it's in Torrance. In the end, though, I stayed with the Big Casino after I scored a consultation with their Lung Cancer Clinical Research Director. And for the first time, after six months of my original diagnosis, I understood exactly what was going on within my body.
The Clinical Trail Onc proceeded to explain the type of cancer I have, how it spread, and followed up with showing me all the scans I've had and how things have improved/worsened. I got a better grasp at how this disease was affecting my body, but more importantly how it was not. It was fascinating to see how my hip bone was healing by creating new-bone around the tumor. Also, I was introduced back then to the Clinical Trails department and was offered a chance to be a part of a trail. One of my biggest regrets was not jumping at this opportunity then, especially after he talked more about the latest lung scan.
He concurred with the results that the tumor had spread into my lung and showed me on his screen a huge blob emanating from the center of my chest and spilling upwards into my upper long.
•Me: "Okay... what now?"
•Clinical Trail Doc: "I suggest that you follow up with your Oncologist's instructions and see the Pulmonary Spec. You should also have your biopsy tested for mutations as this will help identify the DNA make up of the tumor should you decided to get involved with trails."
•Me: Can I kiss you now?"
I left his office reassured that there was still hope in getting myself treated, though clinical trails are no easy road to success either. There is a lot that goes behind the scenes before a patient meets trail requirements, and then there are the unknown side effects and monitoring by the trail team during each phase.
But in the end none of this mattered...
My Oncologist did not follow through with the Clinical Trail Doc's recommendations and proceeded to stick to her plan of having the Pulmonary Specialist put the stent in my lung while she came up with a new Chemo protocol. I argued that I wanted to get my biopsy tested, but she conveniently brushed this away by saying that the HMO would not approve the cost.
So... for the third time in 2016 I was laying on the surgery slab at Ceders-Sinai, waiting to get this stent inserted in my lung to aide my "perceived" lack of breathing (even tho I did not have any breathing issues), and all due to the cancer tumor spreading.
And just like that episode of "Breaking Bad" I mentioned earlier, where it was discovered that Walter White's tumor did not in fact spread, but that the blob was actually radiation fibrosis (scarring from radiation treatment):
IT WAS NOT THE TUMOR IN MY LUNG THAT SPREAD BUT WAS ACTUALLY RADIATION FIBROSIS.
• I did not need the stent after all, there was no blockage in my lung.
• They did not see any evidence that the was a tumor alive, only radiation scarring.
• I was given a "lung-cleaning" for shits & giggles.
• And yes, the Tumor had not spread.
How the fuck did we go from That to This? Especially after three fucking doctors saw the same scan and came to the same conclusion?
Oh yeah...
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