Change Your Mind

Wow. This post might have been better named “Change Your Course.” I started down one little tributary and ended up in a completely different rushing river. Here’s the tributary (illustrated, of course):

We either have been that person (ARE that person… and in that case, what are you doing here?) or know that person. We have expectations about how something is going to go, then when things go sideways, we get mad, protest loudly, assure ourselves that No One Has Ever Been So Mistreated/Misunderstood/Miserable. The vacation (or weekend or dinner or whatever) is RUINED. I’m here to tell you that THAT is a giant waste of energy, as are a few other mindsets that drive me mad. Because who has time to waste with Shoulda Coulda Woulda? In there words of my friend, the amazing Ken Block, CHANGE YOUR MIND.

I just got back from my not-kiteboarding trip to Costa Rica. I had been looking forward to just lying around on the beach, getting a tan, hanging out. Patrick and a new friend from London, Louise, though, were super stoked to kiteboard. “It didn’t start raining until yesterday,” said Nicola, the kiteboarding hotel owner when we arrived. Well, it hadn’t stopped by the time we left ten days later. I’ve actually never seen rain like that. Rainforest rain. A downpour like you see in Orlando every day for 30 minutes at 4… but it lasted 12 straight hours, took a deep breath, then rained some more. There was also no viento. No wind. Although they were hopeful, day after day, Patrick and Louise got nada. I’m fairly certain neither of them even touched a kite.

Vacation ruined? Hardly. Expectations had been high for kiteboarding (and suntanning), and we could have pouted amongst the centipedes and ants for ten days, but we’re not like that. We changed our plans (daily) and changed our minds about the holiday we were having, which I loved. There were two hour drives to animal sanctuaries (animals seized were poached and about to be sold illegally. People suck.), an SUP ride (the picture explains) to an island, a day trip to Nicaragua (where it was also torrentially raining). It definitely wasn’t the vacation we were looking forward to, but we got to do and see unexpected things that we would have missed, if the wind had blown and the sun shone. And now, we can go back to do what we meant to do.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A few days after we got back, I had a routine check in with Dr Akerley. That’s when the day, and the trajectory of my life, went off the rails. I had labs (blood analysis) before my appointment, like I almost always do. These days, they usually show slightly high calcium, good red and white numbers, and acceptable levels of everything else. This time, not so much. My  overall WBC count was good, but the eosinophils had multiplied like bunnies. WBC’s are composed of eosinophils, neutrophils,, basophils, lymphocytes and monocytes. Eosinophils are supposed to be 1-4 percent of the total make up of that. Mine were at 25 percent. 25 PERCENT. It’s never good when your doctor’s eyes bug out of his head, and I knew he was going to take me off the Afinitor/Everolimus. Sky high eosinophil counts can be a response to a drug that is too toxic, and both Dr Akerley and Dr Rajan (who I consult on every development) agree that is most likely the cause since I’m not fighting any kind of infection. For now, I’m off the drug, at least until I get labs drawn again in 9 days. The docs want to see if my eosinophils are still running amok. If they aren’t, it’s a pretty good indication of a drug toxicity. Oh, I also had an emergency CT scan after my appointment last week. It showed stable disease. So the Everolimus is probably working, but my body won’t let me have it. You can’t make this stuff up.

I have been here before. The first trial drug I took was Sutent, which caused dramatic shrinkage of tumors. It also drove my WBC count into the basement. Cuttting the dosage didn’t help, so I had to come off of it. (Weirdly, a genetic test I had a year or so ago showed that I am no longer sensitive to Sutent. It most likely wouldn’t work for me anymore.) I am not all that sad to give up the Everolimus. My shortness of breath is worse than it’s ever been. Even turning over in bed can leave me gasping for air. I use supplemental oxygen almost all the time when I’m home and limit time without it when I’m not. Even sea level only brings a little relief anymore.

What next? I don’t know. (I’ve been here before, too, kind of.) Dr Rajan has nothing promising for me coming up. Dr Giaccone ended the Selinexor trial for TC patients for toxicity. There’s always Dr Loehrer’s BBI trial in Indy, but that requires me to fly to Indianapolis once a week for chemo. Not awesome. I am exploring another round of proton therapy for the big tumors. I am not yet considering standard chemo. We’ll see where this big unexpected river takes me. I’ll keep you posted. Until then, I’m keeping on keeping on. I’m with friends in Regensburg, Germany right now, after three days in Prague. We start down the Danube River tonight and will see some beautiful places. Unbelievably to me, even a short, flat exploratory bike ride fills me with anxiety. Still, I signed up to pedal around Vienna. I’ll visit three countries I’ve never been to before (Czech Republic, Austria, and Hungary) and put them on my Been app, to bring me to 59 countries visited. (Do you have the app? I’m obsessed.) There’s nothing I can do about this splashdown in a strange waterway but worry, and I’m not going to do that.

Next week, I’ll start to figure out how best to keep myself alive longer. This week, I’m going to live. And #defy. And drink a Pilsner in Pilsn, its birthplace. And listen to Mozart in Vienna. Life is good.

(Photos from CZ and Germany to come as soon as I figure out why my Mac suddenly stopped importing iPhone photos)