A Little Light in the Darkness

I'll tell you, this has not been a fun 8 days.  Waiting for medical test results is not like waiting for Christmas.(1)

At my appointment last week, Famous Squamous said that my PD-L1 results should be ready in 2-3 days.(2)  That's all I heard, and it is in K/BWE's careful notes.(3)  But then later in the same appointment, K/BWE heard him also say that it would be 1 to 2 weeks before we would have immunotherapy results, and she put that in her notes as well.(4)  Famous Squamous was speaking quickly and moved on to other critical topics, so K/BWE and I did not have time to ask him to clarify.  "Blah, blah, blah, your hearing, blah, blah, blah, turn into an abstract artist for a single day, blah, blah, blah."

So we waited. And the wait was driving me crazy.(5) The anticipation was killing me.(6)  Even my ever-energetic ever-eager dog looked at me like, "dude, chill out!"  I was not chill, and I was not going to chill until I got some answers.

Last night, I tossed and turned.  All my meditation techniques and apps failed me.  This morning, 8 days later, we still had no PD-L1 results.   

Then, the phone rang.  It was Famous Squamous.(7)  He said that the results are back, and my tumor is indeed PD-L1 positive!  That means that I will probably be started on pembrolizumab (Keytruda, Pembro) alone, and not chemotherapy. What a relief!

Pembro is a great advance, but not necessarily a miracle drug.  For some, it doesn't work (although having the PD-L1 marker is a good sign that it will work). For others, it works for a while, but then it stops working. And for the luckiest, it keeps on working and working and working. But Pembro hasn't been studied long enough to know whether even the luckiest people will live normal lifespans.  And of course, we don't know if I will be among the luckiest. 

We also don't know if it will make me sick, how sick it may make me, and for what fraction of the time it might make me sick. Treatment with Pembro requires an infusion by IV once every three weeks.  Some people it devastates.  Some it barely touches.  Will I stew indefinitely in side effects that will force me out of my career, or will I be one of the really lucky ones and keep going as if nothing is happening?  We'll have to wait and see. 

But Tinkerbell has lit up far in the distance down this darkest of dark tunnels.  Maybe there is a way out.

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(1) "Oh boy, what's Santa bringing?  I know it's early, but CVS has the decorations already, and he said he was coming in 2-3 days."

"Don't get too excited, Tom.  It might be a lump of coal."

(2) No points off if you don't remember.  Besides, this is a more accurate and complete way to put it. 

PD-L1 (which I remember by using a set of four-letter words as a pneumonic) is the protein that some cancers overexpress (have more than normal cells) on their surfaces to hide from the immune system.

The tumor is the Joker, and those special T-cells are Batman.  Just as Batman is about to capture the Joker, the Joker throws his special illusion dust into Batman's eyes. "Commissioner Gordon, for a moment I didn't recognize you in all that clown makeup!  By the way, that's a nice purple suit you're wearing."

Pembrolizumab is like protective Bat goggles that protect from the illusion dust (PD-L1), so that Batman can recognize the Joker for the villain he is.  "Nice try, Joker, but it's back to Arkham Asylum (actually programmed cell death) for you!

By the way, this is what 'boosting the immune system' really means.  Crazy claims for antioxidants and various herbs are scams to empty your wallet.  No one has tested them. 

(3) Did I ever mention that you need to bring a note-taker to serious medical appointments? You do. You can't have mine (unless you're family), so get your own!

(4)  How does it work when the contract says two different and irreconcilable things?  Does the first statement control? Or did second statement void the first? Can I get my money back??? I already talked to my lawyer (K/BWE), and even she doesn't know.

Actually, she does know: she says it wasn't a contract, because "there was no consideration!" (That is what passes for humor among lawyers. If you don't get the joke, ask a lawyer).

(5) I should be more realistic. As my father likes to say, "that's no drive.  It's a short putt."

(6) That's incorrect.  If anything is killing me, it's--no, I won't say it.

(7) Famous Squamous was very professional about it and said good things about the team at Man's Best Hospital.  He's a great writer and authority and a good guy, but he was just not the doctor for me or for K/BWE., and neither were his surgeons.  I wish him and his surgical team well.

Mickey Cormorant: Tom, do I look like Batman?

Me: Yes, Mickey.  Just like Batman.