They went that-a-way . . .

More aimless meanderings this past week through the LA medical machine. I was supposed to get more Trabectedin but didn’t because the medical director at the chemo factory waffled (again) on his position regarding one final treatment. But he doesn’t seem to understand (or does not want to accept) the fact that I had never been given the one (and only) type of scan that would have identified the spinal metastasizes before they resulted in my paralysis in the Middle East: a spinal MRI. So was the Middle East incident a failure of Trabectedin or a failure of imaging protocols? After sending me back home last week, he again changed his mind and I’m now set for treatment this coming Tuesday.

Went to a major medical center in LA regarding treatment of the spinal metastasizes with radiation. Although these guys specialize in stereotactic radiotherapy (resulting in maximum dosage to lesions with minimal collateral damage) they recommended an old-school low-tech treatment approach. (Seems as though the lesions are not limited to T6-8 but rather are distributed up and down the entire spine). I tried my best to understand their rationale but could not – chalk it up to my vicodin-induced haze, weasel-worded doctors, or both. But something smelled fishy in Denmark so we will solicit the opinions of some of their “competitors” before committing to an approach.

I continue to experience a substantial amount of pain and stiffness in my back. As previously noted, this appears to be coincident with a general return of sensation. So I consume the usual cocktail of this and that in an effort to knock down the pain . . . it takes some time but the recipe usually gets dialed in right at some point.

Of course, return of the opiates means a return of my old friend constipation. So on top of the pain cocktail we add fiber, osmotics, and stimulants. Orally and . . . ahem . . . by suppository. Every morning. But it’s beginning to get the job done. And I tell you, it’s no fun being backed up, particularly in light of the other freeloaders that have taken up residence in my abdomen.

Walking continues to be a chore but I seem to make a little progress every day, contrary to the anticipated January 1 “drop-dead date” regarding improvement. My legs are getting stronger and more coordinated but I still use the walker most of the time, only occasionally using the dual-cane approach. All in good time, all in good time . . .

The Foley catheter was removed from my bladder on Thursday. It is certainly nice to no longer be tethered to an external pee bag – I much prefer the internal one that was part of my original build. However, I cannot yet relax the muscle that allows me to pee. So in order to prevent my bladder from overflowing, I have to “self catheterize” four times a day. This entails sticking an 18” tube up through my you-know-what and into my bladder. At 7AM, noon, 5PM, and 10PM. The urologists tell me they are optimistic that I will regain control of that valve soon. In the meantime, the workaround is not as bad as it sounds. And of course, Cec is always there to offer cheerful words of encouragement during the process . . .

I regularly awaken in the middle of the night in searing pain, needing drugs and/or a shifting of my body position. Sometimes I need to get out of bed and into a chair. I don’t know how the rest of you respond to being awakened prematurely, but I am always grumpy. But no matter what time it is, 1AM, 2AM, 3AM, Cecily pops right up and hurries over to my side of the bed, walker in hand, a kind smile on her face. And in the darkness I can always tell that she asks for nothing, except maybe a return smile and a kiss. Precious moments.

So I spend a lot of time reflecting on how easy life used to be. About all the things I used to do without giving them a second (or even a first) thought. And as I now struggle with even the most mundane tasks, I am compelled to state Paul’s Third Law: “Live for more than just life’s good moments. Identify and savor small, seemingly insignificant accomplishments. And understand that without thoroughly embracing the bad moments you cannot possibly put anything in its proper perspective.”