Friday, January 10, 2020

The hindsight of 20/20 vision

It's Thursday, January 2nd, 2020 AD.

Noon-time at the UCI cancer center where I'm scheduled for my 4th week check in. It's been 28 days since I started Phase II of the TPX-0005 clinical trail and it's been quite an experience. Now, before I start rambling about the pros & cons of my latest drug exploits I figured I'd give a quick recap on how I eventually got here:

Not mine, but cool idea

August 2015:
Slight symptoms in my breathing.
September 2015: Visited my PCP and was told I had the flu (flu shot was given).
January 2016: I began having hip pain, PCP said it was sports related injury.
April 2016: Ongoing hip pain prompted referral visit to arthritis specialist. Nothing noted.
May 2016: Chest x-ray (finally ordered by my PCP after I coughed upped blood)
May 19th, 2016: "Hello spot!"
June 2016: Bronchoscopy, mediastinoscopy, biopsy and all sorts of other related procedures.

June 28th, 2016: "You got cancer kid..."

July-November 2016: Chemo and Radiation.
December 2016-October 2017: Immunotherapy. (Stopped due to progression.)
November 2017: Brain radiation (6 mets). No drugs.
January 2018: Dx with ROS-1 mutation (affecting 1-2% of all Lung Cancers). Started Xalkori.
October 2018: Apparent tumor spread in my brain. Was referred to Lorbrena clinical trail (phase lV).
November 2019: Apparent tumor spread in my brain. Was referred to TPX-0005 clinical trail.
December 2019: First dose taken.
January 2020: Whallah!

At least the road's paved (I have insurance)

As you may note, there have been quite the many steps taken in the past 3 years to combat this disease. And, if you have been an avaunt reader of my lil' blog you'll recognize that each step was met with its own unique challenge. While the thought of giving-up has crossed my mind (many of many times) I would not be humble enough to pat myself in the back, or toast the achievement of living this long while maintaining my sanity. Just like the crack in the Liberty Bell defines it as "The Liberty Bell" I have yet to have my cracks define me as a cancer patient, much the less a quitter. But I am starting to feel battle fatigue.

I also have a crack.

The first week on TPX was met unremarkable. I was told of the potential side effects, mostly dizziness, and was prescribed a plethora of additional pills to combat these. However, by week two I began experiencing nephropathy throughout my body. It was extreme pain everywhere that no over-the-counter meds could stop. For the first time in this cancer broo-haha I felt agony and fear, and after two days of suffering I finally reached out to my med team who prescribed Gabapentin for nerve pain. But it didn't work completely. I figured that my body was still adjusting to this new protocol and that I needed to "man-up" and push through, but it got me. Got me bad.


I was finally prescribed a narcotic, legitimately becoming a part of the opioid epidemic in the US. Granted, I did not abuse these. I didn't even want them, but the pain was just too much. Eventually, this subsided some-what and left me feeling like I had a really bad sunburn (bowlegged walk). This was manageable and was elated to get some relief as I went onto week three, where the dose was doubled.

My favorite doubles
Now things got interesting. I began having cognitive and memory issues, which I attributed to the med entering my brain. Also, the dreaded dizziness started to manifest and I went from happy-high hippy to sad-drunk schmo, compounded with roller-coaster emotional swings. A true shit show, but hey! I'm alive...

now you know

It's now January 10th, 2020 and I've been in Cycle 2 of Phase Two of the clinical trail (week 6 overall). CTs & MRIs are scheduled by EOM to check on physiological response, and I feel neither excited nor nervous. I'm pretty much taking it day by day with minimal expectations, but I also feel hollowed-out spiritually. Still, I enjoy the comfort of my friends & family and the creative zest that lingers, but I do miss the motivational excitement that once sprung within.

sigh











No comments:

Post a Comment