Down The Rabbit Hole or What the??????

I checked to see if the moon was full (it’s not), Mercury was in retrograde (it’s not), or a menehune/leprechaun has been following me around making mischief (still a possibility).  I consider my life pretty charmed, despite THREE CANCER DIAGNOSES, but my last two visits to Maryland have been more challenging than charming.

Let’s review, with details this time. On the way to Georgetown, where I am to find out the Keytruda isn’t working and I’ll be leaving the trial, I find myself on MD 200 without a toll transponder. “There’s no such thing as a toll road where you can’t give them cash money,” says Patrick. Wrong. Dumbest system ever. They’ll be sending an invoice for the toll, spending part of their toll booty on the 49-cent stamp and the man-hours it takes to track me down.

Then, there was the $100 ticket I got for parking on Wisconsin Avenue during rush hour. Why did the meter take my money if I’m not allowed to park there, I ask? I just wanted summer rolls. Which now cost me $53 each. I say to my niece, Amanda, “Great, now I’ll probably get a speeding ticket.” Hello, Fate Temptress.

I couldn’t start the PHA trial immediately because I couldn’t get a pre-trial eye doctor appointment that I needed. So I flew home for three days for a freelance shoot on Monday morning in Salt Lake City. On Monday morning, my interview subject canceled. I just flew across the country for nothing. Well, not for nothing, as three days (in a row!) at home are a luxury these days. Plus, we got to see the annual ski movie at the library, where yet another of my friends who was sitting right next to me hit the raffle jackpot and won skis, bindings, jacket, etc etc etc. This ten seconds after he declared to me that the raffle was fixed. Ha!

When I flew back to MD yesterday, this was waiting for me on the counter of my brother and sister-in-law’s kitchen:

A speeding ticket. A ONE HUNDRED DOLLAR speeding ticket. They got me on one of those sneaky little robot cameras. I couldn’t believe it. Although I did actually bring the universe down on my own head when I joked about it to Amanda, I suppose. I didn’t even get a $53 summer roll this time. Money for nothing.

All this leads me to yesterday, the longest, most frustrating, challenging, insane day I’ve ever had as a patient. I went early to get labs done, there’s no order, I wait. I go to get my CT scan, they have the wrong order. I wait. I go for the eye exam, they say I’m late. The doctor waits. Somewhere in all this, Dr Giaccone calls me down to his office with the really bad news. My liver enzymes are sky high. The two enzymes they measure should be in the 30s and 40s. Mine were in the 170s and 190s, respectively. Five times what they should be. Twice what they could be for me to start the new trial. Dr G believes this is fall-out from the Keytruda, much like the Neutropenia was from the Sutent. My Uber driver slowed to look at me, then drove off at the speed of light.

Now, it’s 4 pm, and I haven’t eaten or drank anything besides Crystal Light with Barium since 9 am, since my CT scan orders were all screwed up and I didn’t get in til just now. Before I go home, all I have to do is pick up DVD copies of my CT scan for a doc at the James Cancer Center. It should just take a minute, but you guessed it: They can’t find the orders. They have to start making the DVDs now. THAT puts me into DC-to-Maryland rush hour traffic at 5 pm. THAT looks like this:

The drive that usually takes me 50 minutes took me 2 hours. I’m mad, frustrated, tired, aggravated, disappointed, bonking, all of it. A really wise friend of mine told me years ago that when this happens, which doesn’t often, acknowledge it, feel it, let it go. So that’s what I did. Except for the bonking part. I need food bad (so bad that it’s an adjective, not even an adverb for effect).

After all, there is still a plan, it’s just a different plan, and I am one who is ok with change. I’ll get another CBC next week and hope my liver enzymes go back to bed where they belong. Then I can start the trial the following week.

Meanwhile next week, while I’m in Columbus for the Pelotonia check presentation (and Sheryl Crow, yea!!!!!), I may or may not get a tumor biopsy so Dr Roychowdhury can see if my RNA has any clues as to what might work against the cancer. And then I’m off to Fayetteville to jump out of a plane with the US Army Golden Knights. See, there’s still a plan, slightly altered, but overall, still better than working.

And last night, things improved immensely. My family held dinner for me, there was a glass of wine in my hand within minutes, and my lovely Sheryl made one of my two favorite desserts. It’s the next best thing to pie. And it’s kind of in the same food group. I had two. Onward.