OK, So the title of this blog is a negative: “NEVER surrender.” Much different than my usual positive messages of DEFY! LIVE FEARLESSLY! EAT PIE FOR BREAKFAST! Sometimes, putting myself at the helm of the battleship every minute of every day gets a bit tiresome (except for the “pie for breakfast” part). I just keep getting rogue waves in my face up here. So I’m moving to the middle of the boat for this post. My message is the same, but coming from a slightly different perspective, in my mind at least.
I worked for Ivanhoe last week in Los Angeles. I had been really looking forward to working both in LA, which I love, and at sea level, which I am coming to love more and more. But by the time it was time to leave, I had been back on Everolimus/Afinitor for a week and it was already taking its toll. I just can’t fill my lungs, which makes me cough. I was starting to think the LA trip wasn’t that great of an idea, but it was all set up, and I’m not surrendering, so off I went.
What a great trip.
It was one of those shooting trips where everything falls right into place, everyone is on time, the stories are great, and I come in under my per diem at the end of the week. One of the stories was about Food as Medicine. Project Angel Food is heading up a program to make and deliver medically-tailored food to people with congestive heart failure to see if eating well keeps them out of the hospital (Surprise! It does. Duh.) The executive director is my 11 pm producer from WESH in the 90s, Richard. We’ve seen each other a few times since those days, but this was GREAT. People were talking about how great a job he’s doing, how he’s terrific and talented, etc. I said, “The Richard I know went with me to a local amusement park in Orlando, and we took a golf cart, which we ditched in… well, a ditch.” There’s a conversation-stopper.
We also had to zip (not that you ever “zip” on LA highways) up to Ventura, and drove through the city where I was born. Oxnard. It was pretty much everything I thought it would be. We didn’t stay long or stop there on the way back. But it was still pretty cool.
I came home from LA and nearly lost my shit on the jetway in the Salt Lake airport. I was getting shorter and shorter of breath as I got to the end of it, then had to sit down and not breathe for a while. Put it this way, my bag was the only one going around and around and around on the carousel when I finally got enough oxygen to power me there. A full-on panic attack where I couldn’t draw in a full breath. And it was 10:30 at night, so even though I wanted to call for oxygen or an ambulance or a ride, none was to be had. This does not bode well for me, as I have four trips out of SLC before the end of June. So, because I’m not surrendering, I spent an arm and a leg to buy a portable oxygen condenser that I’ll take with me on all my trips. It’s about the size of an old cassette tape player (sorry, millennials who have no idea what that is. Ask the Google.) and weighs less than five pounds. I also refilled my Atavan prescription, because I’m over those panic attacks. And I have places to go.
So I’m home from LA, back in elevation and suffering like a dog. Even on the lower dose, the Everolimus/Afinitor is sucking oxygen-absorbing capabilities from my body like it’s a coke and red slurpee on a summer day. Still, because I’m too dumb to surrender, I popped into a yoga class where I sat in child’s pose for about half an hour. And I went to an Orange Theory class, which I had to leave early because they were doing so much core…… and I’ve re-broken my rib. That’s right, the violent cough is back. The rib had just stopped hurting, and we’re back to ground zero. The rib surrendered, the bastard. The air is just too thin to keep me from coughing so hard. So I glommed on to a trip to Costa Rica, where I’m not going to kite surf. I’m tagging along on Patrick’s kite surfing trip, but I plan to do nothing but breathe, get sun, heal, read Michelle Obama’s book that I bought for myself at Christmas (!), and do yoga if I can find it.
Finally, with everything that’s been going on with me for years now, I haven’t made any big purchases, except for plane tickets and vacations. As optimistic as I am, I still couch those plans with travel insurance every time. I just never know how I’m going to feel, whether I’ll be in a new trial, or whatever. My car is 13 years old (you see what’s coming, don’t you?). I truly thought it would be the last car I owned in this lifetime, which we’ve discussed will be shorter than most. But my friends were selling their daughter’s 5 year old Porsche Cayenne…. And now it’s mine. I figure the sign that I did the right thing was that my car sold in an hour or so.
People might question the fact that I’m buying a new-to-me car when my future is so uncertain. To them and for myself, this is my way of saying I’m not going to give up. My refusal to surrender, along with incredible good fortune in finding doctors, trials, and drugs that work for me have kept me alive for almost six years now. That isn’t supposed to happen to people who’ve had Stage IV metastatic disease since 2014. I am defiant with my new red car and my new portable oxygen condenser and determination to do yoga in Costa Rica despite the fractured rib. (Can I just have a day with no f*cks??????) I’ll soon be back to DEFY. But for now, I am a little less active verb, but with the same stubbornness that’s gotten me to 2019. AND with a red car. #defy #livefearlessly #eatpieforbreakfast #neversurrender