Life in the 'big house'

This is a nice hotel, which is a good thing because I’ve been here three weeks and may not go home until after my new transplant, which is now scheduled for Jan. 30.

I wake up at least twice a night drenched in sweat, and help is only a buzzer away. A PCA (personal care assistant) comes in with a new hospital gown, and I sit in a chair while she changes the sheets. It’s just sweat, but I told her the other night, “I feel like a little kid.” When she is three-quarters done making the bed, I climb back in and she puts a clean sheet and new blanket on me and tucks me in.

Bright and early, a nurse comes in with my pills.
“Your pills, madam.”
Well, more like, “Good morning, I have your morning pills, how was your night?"

The list:
Labetalol (for my blood pressure, which rose when I came into the hospital), Prilosec (antacid), Levofloxacin (antibiotic), Tricor (for high cholesterol, also new for me), Valcyte (anti-viral to treat and prevent CMV), Voriconozole (anti fungal for the pneumonia), Lexapro (anti-depressant), folic acid, multivitamin and sometimes magnesium.

Then a nurse or the unit coordinator brings me coffee, mustachioed Steve drops off the New York Times, and I lounge half the morning and then go do my 20 laps.

I get platelets or blood every few days or so, and, as needed Ativan or cough syrup with codeine. Sometimes I feel like I’m being held together with tape. On some days I thought I would write but I could barely find the keys, and my hands shook. I get Benadryl with every transfusion, and I’ve also had some Demerol when a fever was coming and I had the shakes. But my fevers have decreased, and they discontinued the Demerol in favor of warm blankets, which are really comforting.

The other night there were workmen in my bathroom after midnight doing battle with a leaky faucet. I said I didn’t mind the drip that much, and suggested they return the next day. They kept at it for a while and then did come back the next day, I think around 8 a.m. A woman came in to do another EKG, and I said, “There are men in my bathroom.”

She eyed me as though she thought I was delirious, but as if to humor me, she went over and knocked on the bathroom door. Sure enough, two workmen were squeezed in there. She told them not to come out until she finished the EKG.

The pneunomia is continuing to clear up. I can take a full breath without coughing, and the oxygen saturation that they check with my vital signs is nearing normal again. A week ago I couldn’t get past about 85 percent, and I went on oxygen for a little while one night. Now I’m back up around 98 percent.

A hairdresser from the Friends Boutique at Dana-Farber is coming to give me a haircut this afternoon. I hope that’s as exciting as the day gets.