My previous post outlined my experiences in this journey undergoing a clinical trail that set me in a course of uncertainty, yet I was willing to face the rocky experience and was determined to complete the study. What the hell, I had nothing to lose. Really. In my mind I was already "dead", and I figured that any legacy I had left would be by undergoing this study to help others. I realize that I had a young family to take care of, but ever since I was diagnosed I seemed to of reverted myself into a protective shell. A place where I can hunker down while I dealt with this matter alone. Unfortunately, this feeling became compounded by the drugs I was taking and steadily lead me to a very dark place.
TPX-0005, or Repotrectinib, is the strongest cancer drug I've been prescribed. It's designed to work for a very aggresive mutation called ROS-1 which affects 1%-2% of lung cancer patients, of which yours truly is. I almost wish there was a patch (biker vest) that was awarded to person with such a rare dreaded disease, yet this would not necesarilly be something to be proud about.
In Spring of 2020 my Oncologist mentioned that the scans demostrated significant growth in both my lungs and brain, yet experienced consultants in Pulmonolgy & Neurogoly disagreed. Eventually, the Lung was ruled out and deemed stable, but the brain had marked issues that needed to be addressed. There was increased edema (swelling) in my brain that was caused by the radiation treatment received in 2017. This caused necrosis (dead tissue) which unfortunately can be mis-dianosed as tumor progression. Not a big deal since this is always mistaken as such, but the issue was whether to have brain surgery to verify the matter and scoop out any dead cells from my noogin.
Worse, this dead tumor was deep in my motor-skills area which was affecting me physically: the right side of my body was much weaker, especially my leg. I needed to use a cane for most of the Summer and required the consultation of a Physichal Therapist. In a matter of weeks I became a frail old-guy, hunched and dragging my feet. Hard to fathom seeing as I always considered myself a stud-muffin. Yet, this really affected my psyche. I had to resume the dreaded Dexamethasone steroid to reduce the brain swelling, plus a plethora of other meds with their own side effects. It was bad. Just ask my wife/kids.
In time, the brain swelling went down and I improved significantly, much to the chagrin of my oncoligist who was ready to sign me off as a failure in the Repotrectinib trail. But, here I am, celebrating Cycle 13 of the study, or 1 full year enduring this drug. Plus, I had a follow up CT & Brain MRI last week. Results: All Stable.
Lesson learned: It ain't over til it's fucking over. And then some.
Fuck Cancer. Fuck COVID. Fuck Rasists Pieces of Shit.
Here I am 2021.
