Arms Akimbo, I’m in Limbo

 

 

 

 

 

 

 

“Go,” he said enthusiastically. “There are no contraindications that you shouldn’t go to the Amangiri to celebrate your friends’ 50th birthdays. “He” is my oncologist. The birthday weekend is one I’ve been looking forward to for months. So into le Bus I went, with 28 more Percy birthday peeps. I felt fine going down, and I had an O2 canister in case I didn’t feel fine. Dinner under the stars in the desert was perfect and delicious and fun.

Then, I didn’t feel fine. At about 11pm, I realized apparently, I am the contraindication. After realizing that my O2 didn’t work (operator error, I was to learn later), I sat up most of the night, waiting to catch the early flight out of St George, back home. That part worked out; The Percys’ oldest son was flying in to St George and the timing could be impeccable with the 2 hour ride to St George and the 11:30 flight out (I’d be getting on Alex’s just-arrived plane). I bought a later ticket, not thinking I’d make the 11:30, but I got there with 45 minutes to spare. I asked the ticket agent about getting on the earlier flight.

She: There’s a $75 change fee.

Me: Ok.

She: You’ll be bumping someone off of standby.

Me: Because I’ll get on because of my Diamond status?

She: Yes.

Me: Ok.

She: And you don’t have to pay the $75.

Me: My day is improving.

My friend, Angie and our friend Kimberly, picked me up at the airport, which was terrific, because I wasn’t going to be able to see Kimberly. I had to bail on breakfast with them the next day, but at least I got a touch, and I’ll see her in Phoenix this summer. I’m sad I had to miss celebrations for two of my favorite people on earth, but it was probably a good call. It was definitely the safe call, which I usually don’t make.

I had a visit already scheduled for Monday with my pulmonologist at Huntsman, which turned out to be terrific timing. Kelly, my oncology nurse, popped in. We all decided I’d continue to hold the Everolimus/Afinitor until we figure out what is causing this incredible shortness of breath. Dr Iravani got me in for a bronchoscopy the next day. I’m not sure why, but I’ve been fighting this procedure for probably six months for no apparent reason. But now, all my Spidey defenses are down. I agreed. The bronchoscopy is where they thread a tube with a camera and a light down your throat and take pictures. They also put fluid down there and try to suck as much of it back out as they can. They’ll get cells that should tell them if it’s an infection or drug-induced pneumonitis (my guess) causing all the trouble. One of the nurses said he was going to put three syringes of lidocaine in my throat to numb it first. After the first one, he asked how it felt. I REALLY wanted to tell him, “It feels like college!” but I didn’t think that would be that funny in the procedure room. (But you peeps who get it are probably laughing.) When he started putting a fourth syringe of lidocaine in, I said, “YOU LIED!” He was quite taken aback. I told him he said THREE syringes, and now he was giving me FOUR. He said he was giving me half a syringe at a time. The other nurse said, “She’s right. You should say six.” That’s what I’m talking about.

Now, I’m in limbo, waiting to see what the tests say, waiting to start what i hope is a reduced dose of Everolimus/Afinitor. Because (here’s my buried lead, which, shame on me, I’m doing after hearing Bob Woodward speak last night) it’s working. There was some comparison scan confusion, but my doctors agree that there is disease regression between my Feb pneumonia CT scan and my March pneumonia CT scan. They may decide the drug is too toxic for me anyway, but I’m hoping not. I’m pretty tough, and I’ve already made weeks of plans to be at sea level between now and mid-May. And, as it was before I got the Everolimus/Afinitor, there’s nothing else but standard chemo out there for me right now, and that just doesn’t hit.

So for now, I am trying hard to do nothing (not as easy as you’d think). I actually have been putting two things a day in my dayplanner, and I’ve been fairly vigilant about not doing more than that. T0day was going to Salt Lake to get an oxygen compressor for my work trip to Seattle next week (even though I probably won’t need it) and having my chiropractor put my ribs back in place after i coughed them out of place again. My amazing friends have done a really good job of making sure I don’t have to leave home much, bringing food, clearing me out of Deer Valley for the season, and driving me around when I’m not supposed to be driving. After not feeling better for ten days after getting out of the hospital, I’m feeling slightly improved, so it must be working. And these make me feel better, too. #Defy. But quietly sometimes.