Odyssey

I’m home now. I was admitted to the hospital on Thursday, January 21. It’s taken me a few days to rest and feel semi-normal.

..

Because of chemo, I have to watch out for the usual symptoms. I’m supposed to go to the hospital if I have a fever of over 100.5. I wish I’d just gone the first time I’d gotten a fever. Fevers are a very common side effect of the chemo drug I was getting and I don’t particularly like hospitals, so I didn’t report it at first.

When I finally did report it, the natural first thought was COVID-19. So they cancelled all my appointments and had me come in for a COVID-19 test.

It was negative. My fever subsided. It took days to get my chemo schedule back on track.

Then I got another fever. And chills and the shakes and body aches. And when I reported it this time, my doctor was unequivocal: go to the ER right now.

I thought I’d be checked out, given some drugs, and get sent home. Instead I was admitted for the night. Then the next. In the end, I was in the hospital for 10 days.

I can’t remember ever being so scared, unhappy, lonely. FaceTime is no replacement for being at home.

It was a staph infection. And the first few days was spent trying to nail down how it stated. Respiratory or skin? Too many tests ruled out respiratory, the most common, so attention turned to my port, installed in the center of my chest to make chemo less painful.

If you recall, I had a port until I finished chemo back in 2012, but when chemo resumed, I had to have another one put in. The second port never quite…healed, I guess? The insertion site was always kind of pink and itchy, despite getting doses of antibiotic cream. Of course, I ignored it too long and paid the price.

My hesitation to just go in and have someone look probably allowed the infection to get worse. It took quite a bit of testing to even figure out which bacteria was in my system and then it hung on against the antibiotics like a champ.

Meanwhile, they were worried the infection had found refuge in my heart valves, which is apparently something staph does, which would be bad news.

Fortunately my heart looked good. But at this point, they knew I was going to be on antibiotics for the long haul. They had to clear the infection, though, in order to put in another IV line to deliver the medication I’ll be getting for the next six weeks at home.

By the way, it’s an IV, but it’s called a PICC, and basically it’s a pipe that goes from my arm right down my middle and into a major heart valve, so the antibiotic can diffuse in my blood correctly.

Ryan went in to get trained on administering my antibiotic and handling my PICC, which given where it goes is not something to be careless with. Now he changes the antibiotic “bulb” every day, fitting a shower between connections, waterproofing my IV each time.

He started drawing eyes on the bulbs to cheer me up. Then he bought some googley eyes from the craft store. We’ve decided to name the bulbs “Cyril.”

We’re on Cyril the Fourth now. We’re going to meet Cyril the 42nd when this is all over.

…

Hospitals are the worst. There’s no way around it. Nurses rule the world and should all be sainted. Health care is a fundamental right. But hospitals, as a concept? It is impossible to get any rest in a hospital.

There was a schizophrenic patient who would start screaming and cursing precisely at 7:30 every night and keep going until he felt like it. One of my neighbors talked loudly on her phone all day as if she was poolside at the Halekulani, treating medical professionals like cocktail servers.

All of the staff were extremely competent and wonderful, though. I wouldn’t be here if they weren’t.

So everywhere I go for six weeks, I have to carry around a plastic ball tethered to a spot in my heart that receives a steady dose of medicine. I don’t plan on going far anyway. I was hoping to get COVID-19 vaccination, but that might have to wait until the treatment is over.

Fortunately, my husband, daughter, youngest son and mother in law are getting vaccinated.

My kids are awesome, my life force. My family is my sanctuary. More on them later.

…

Some good news: radiation went very well. I was noticing increased mobility by the fourth treatment. I hardly remember the pain now. I didn’t end up needing any of the stuff I ordered and don’t even bother with the parking placard. I feel like it’s good karma to save it until I truly need it.