Oh, THAT Rabbit Hole.

That rollercoaster that is my life is pitching up and down and all around like the Drake Passage on an exceptionally gnarly day. I didn’t realize it then, but had probably already started my slow motion dive into bleah on my flights back from Columbus. I went home for a few days, then to Seattle for a five-day Ivanhoe shooting (video) spree, and it had definitely picked up some speed by then. I’m sure I didn’t help it with long shooting days and a ROLLINGSTONES ((WHAAAAT?!?!?!) concert in the middle.

That’s right, those Midnight Ramblers were doing a make-up date at Century Link Field, and Rusty suggested we go. Of course we went, and it was fantastic. They have (mostly) not lost a beat. Shocking, but we were able to get tickets from the venue, not a second seller, so we still spent less than we were paid to be in Seattle.

 

 

 

 

 

 

 

 

Because I’m my own travel agent, I flew home from Seattle back to Park City somewhere in the trough of a rogue wave. I got home at 11, and my flight to Boulder left at 6:40 am. I wasn’t sure I’d make it. My deal with myself was that depending how I felt when I woke up, I’d either get on the plane or go to the hospital. So I got on the plane, but just didn’t feel good for two days. The only thing that makes the muscular and rib pain die down enough for me to sleep these days is Tramadol, since I won’t take a narcotic. But Tramadol gives me a raging headache. I read that ibuprofen actually makes that side effect worse. I read that after I’d taken the Tramadol and 6 Advil. Plus, I needed my little portable oxygen condenser everywhere all the time now, not just walking up stairs. I cut my trip short, but I wasn’t that sure how I was going to navigate two airports, longterm parking, and the stairs up from my garage. I think I chose poorly, Luke.

I got on the phone with Delta, which arranged wheelchairs (!) for me in Denver and Salt Lake, which was not that efficient but necessary. As I checked in, the agent asked if I planned to use my O2 condenser in flight. I said no, because I’ve learned what an international incident that can cause even on a domestic flight with Delta. Then one of the other agents said, “Oh it’s so easy, one phone call and you’re in.” He was wrong. I caused International Incident Number Two, because it required approval from a contracted company with whom I’ve already had some heated exchanges with. Ultimately, I got my approval and, of course, didn’t need the O2 condenser in flight. I wrote the contracted company a thank you email when I got back, because they totally could have stuck to the rules and I wouldn’t have been allowed on the flight. That was 6 days ago. No acknowledgement. And now I literally have two strikes on my record with Delta and the O2 company. The Delta supervisor said if I try to bend the rules again, they won’t let me board. I wasn’t even bending the rules! It was their agent that told me the process was easy. I was thinking I may have to move my 500,000 miles to another airline. But I thought it with my inside brain.

Anyway, wheelchair through the Salt Lake Airport, Patrick picked me up and took me to long term parking so I wouldn’t have to schlep my bag and I went home. For a few hours. I woke up with my ribs in a vise and no air in my lungs, even sleeping with oxygen again. We called 911 AGAIN, and I took another ambulance trip, this time to the University of Utah Hospital in Salt Lake because Huntsman was full. Another two-night sleepover. There were blood tests, a CT scan, an X-ray, and an ultrasound. Again, it’s process of elimination to find the most likely culprit. It looks like it’s a rebound of the toxicity from the Everolimus that I stopped taking on June 4. It’s pretty freaky that THAT is the mostly likely cause. Then, Dr Rajan from the NIH said that my raised eosinophil numbers (part of the white blood cell) have been higher than normal since the Keytruda. They were a whopping 50 percent this week. They should be somewhere around 6 percent. I think the Keytruda did more damage (caused irreversible Diabetes, too) than we had realized.

Now, I’m back on 50 mgs of Prednisone a day for who knows how long. If last time was any indication, I should stop feeling like I’m living underwater and in a rib cage vise in a week or so. Sadly, this postpones the start of the Huntsman clinical trial I was hoping to start soon. No one wants me to be on Prednisone and in a new trial simultaneously. So the drought of cancer-fighting drugs continues for me. I’ll get more information at my appointment with Dr Akerley next week. Til then, I don’t have  much energy for anything bigger than, say, vacuuming one room. Or seeing out of town friends (who are almost all here right now, this weekend). Or finally writing my stories from Seattle. I interviewed this bad ass firefighter and mountain bike rider who got stage lV lung cancer on the job and who is fighting like hell to stay engaged and active. He’s been in three trials in four years; my kind of guy. Funny where you can get inspiration, but Jim gave me that as he zipped around on his e-mountain bike. We spoke the same language, and I’ll be channeling him for the next little bit.

So I’m a bit more physically down than usual, not a place Jim nor I are used to or like to be in. But better times are coming for both of us. Jim’s brain mets went away with the targeted therapy he’s on now. I will pick the fight back up once I feel well enough to get out of the rabbit hole and back on the battlefield. I’ll probably go somewhere new, too. You do what you can do always, never feeling sorry for yourself or asking why. I’d rather:

 

#defy

#livefearlessly