RX => R and R (and then whatever comes next)

I’m going to pretend like three weeks didn’t just whiz by with no update. Because there’s a pretty good update. The bronchoscopy revealed that I had an impressively gnarly Pneumocystis jirovecii Detect by Real-Time PCR (that’s what my chart says). My docs think I may have had it since my first pneumonia back in November. That explains why I could never get traction getting well or feeling decent. It’s a pneumonia that happens to people with compromised immune systems, of which I am one. They prescribed 21 days of mega-antibiotics and prednisone to kill the bacteria and take down inflammation. Now, 15 days later, I know the combination works, but within about three days of starting to take it, everything (read: I) started to move in slow motion until stoppage. I was sick. Not chemo sick, but too many drugs at one time nauseated. And so tired.

This hit about the time I arrived in Healdsburg for my 12 days of hanging out in the sun and the sea level. Our friends, Kathleen and Andy graciously opened their uber cool guest house for me to stay as long as I wanted. I was going to get sun, do yoga, Pilates,  walk around a lot. Sigh. There was none of that. In fact, there was one day I didn’t even leave the guest house. No yoga, no pilates, no excessive movement. Although, I will say I was absorbing lots of oxygen. And food, which is a good thing, since I’ve lost about 10 pounds since the beginning of this latest pneumonia experience.

 

 

 

 

 

 

 

 

 

 

I emailed Dr Rajan (of course), who suggested I take Prilosec in the mornings. That worked like a miracle: Nausea and heartburn were gone, and I started to rally. I got to see my friends that live there, and a couple friends imported themselves from Park City and San Jose, so there was always someone to not do much with.

 

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I drove back with Patrick and the cats a couple of days ago. Poor Linus was so upset at leaving California and #catsonvacation that he barfed a lot of the way back. That meant  a swing through the emergency vet before getting to the house. Turns out Patrick’s driving must have made him nauseated (Don’t tell him.)

I finally had to come home because I have doctor’s appointments the rest of this week. Yesterday was the Diabetes doctor, who could just shake his head when he saw what the Prednisone was doing to my blood sugar. Prednisone releases glucose into the bloodstream, so my usual 130 was now in the 300 and 400s. He said that was probably making me feel punk, too.

Today was the infectious disease guy. He changed some of my med dosages around and told me that if/when I get back on Everolimus/Afinitor, I’ll need to take Bactrim every day. He said it’s much easier to prevent pneumocystis than it is to get rid of it.  He also said it takes a long time to get rid of this bacteria and I will feel better in the next days and weeks. Good news.

Tonight at 7:20, I finally have my CT scan, which I’ll find out more about in the morning, when I see Dr Akerley. That’s when I suspect I’ll find out if I can stay with the drug, which I want to do, but maybe at a lower dose. I know it was working. So, onward, forward, relentlessly. It’s what I do. (But can i say, cat vacation in Healdsburg was just what the doctor ordered!!!) #defy.