Let There Be Light

I just reread my last post, as I always do before I write a new one. That girl was a downer. As it (almost) always does, life brightened back up significantly in the last FIVE WEEKS since I’ve posted. It’s not that I haven’t had updates or fun adventures to document here, it’s just that I’ve been somewhat unmotivated to write (Read: Lazy). But here I am, in a much better place than I was last month, despite another hospital stay, the acquisition of an oxygen compressor (read: Old person’s accessory), dismay upon learning on arrival, that Quito is at 9,000,000 feet, and world class shortness of breath.

I’ll go chronologically. This year’s Sundance Film Festival experience, both working and as a movie lover was one of the best of my ten years of attending. Instead of running around (and then waiting for literally hours) for Red Carpet coverage, I cohosted the morning Park City Television Sundance show called “In the Can.” It’s movie makers talking about their documentaries, feature films, shorts, and more. I learned a LOT about this year’s films and met some really cool people, like Lulu Wang, the director of The Farewell (starring Awkwafina, whom I love.) We bonded. And it’s always a pleasure working with the talented, excited, non-complaining, not tired (they’re mostly 20-something years old) (but I’m actually lying. We were tired) PCTV team.

 

 

 

 

 

 

 

I also had my pal, Mike G, for a few days, then the Admiral and Pally making their Sundance debut. Mike’s been to Sundance a few times, but it was super interesting seeing the festival with people who’d never been. They loved it, AND all four movies I got them tickets for won something.

I worked for a few days for Ivanhoe in San Diego, again hoping for warmth and sun. For the second winter in a row, I was disappointed with the weather, but we did some really good stories. I started feeling less than awesome at the end, and by the tine I got back to Park City, I was crashing. I wanted to just try to rent an oxygen compressor and avoid the hospital, where I knew I’d be stuck at least overnight, but my friends wouldn’t have it. So I went to the ER, was tested for pneumonia, pneumonitis, Beri Beri, Ebola, and gout (I joke), then I was packed up and ambulanced up to Huntsman Cancer Center. Ironically, the same two EMTs that took me last time took me this time. We also bonded. Anyway, two days of tests and it turns out I just had a bad cold that combined with whatever else I have going on to produce a blood oxygen level of 77 (Bad). I had to stay two days. At least I could stare out the window, and the food isn’t half bad. (I hope I’m not getting used to hospital food.)

 

As usual, my one goal, upon being checked into a hospital, is getting OUT of the hospital. I always seem to have somewhere to go. This time, it was the Galapagos and Ecuador. I’ve wanted to go to the Galapagos since I was in high school, and it was almost everything I hoped it would be. The best part about the trip is that the animals aren’t afraid of you. There are no predators or hunters, and they see so many people I think they find them boring. The part that surprised me was how many people live on the island. Between 25,000 and 40,000 people live on five of the islands. It’s not the little conservation archipelago I imagined it would be. Still, we saw animals and birds everywhere. It was humid and hot, and we loved our guide Cornelia who can do the Blue Footed Booby dance AND the flamingo (not to be confused with flamenco) dance. https://www.gogalapagos.com

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And now the drug update. It turned out to be a bureaucratic obstacle that got in the way of me easily getting my $32,000 EVERY 28 DAYS drugs. I’ve now been on them for about five weeks. I believe they are working, as I have one tumor on the outside of my ribs, and it seems to be smaller. The side effect that’s killing me, though (hopefully not literally) is the increased shortness of breath. At elevation (read: Home), there are times I can’t walk a flight of stairs without stopping. I do now have an oxygen compressor at home for when I sleep. Dr Akerley told me that people with low blood oxygen whose hearts skip beats sometimes don’t wake up. That was motivation enough for me. Plus, now I mostly sleep through the night, except for when Linus drools on my face.

I am coming back from Maryland right now, after follow up visits with my beloved Dr Rajan at the NIH and Erica at the MD Proton Therapy Center. They both are encouraged and say to stay the course. If the shortness of breath gets worse, there could be an early CT scan (now scheduled for end of March) in my future, or steroids or something. But for now, I can handle this. I have a picture of my CT scan here. Left is on the right. You can see how compromised the left lung is, by tumors and fluid. That explains a lot. You can also see how much of a difference my breast implant makes to my lying down profile. Hmm.

It was a great visit home, too. I checked on my mom a couple of times, for the first time in person since her surgery. She’s recovering well and is mostly stir crazy from not leaving the house for a couple of weeks. No lymph node involvement, and it still looks like no chemo. Good stuff. And, as always, there was a Caps game. It ended 7-2 against Ottawa. I was hoping my TJ Oshie (Chiojioshi) would score a third goal for the hat trick (I was ready to sacrifice my Caps hat (which I got for free at a game)), but no luck. Afterward, rectangular pizza from the Stained Glass Pub. We used to go there a lot as kids, after my brother’s softball, then baseball games. I didn’t see a round pizza til I went away to college. I have to say, rectangular pizza rocks. Pizza is good, TJ Oshie is good, life is good. After the dark, the sun always comes up. #Defy

 

 

 

 

 

 

 

 

PS Caveat: It’s been so long since I’ve posted that I’m posting it without proofreading (not actually a great idea). I’ll proof it later.