Here we are, 'BMT' unit, Children's Hospital...
So far every chemo Faye has had, with the exception of the antibody this summer, came with a list of 'adverse reactions' about a mile long. The 'adverse reaction' list for the antibody was maybe only a half mile... and I'm exaggerating, a little. These first few days Faye should feel relatively 'ok', and I use the word 'relatively' very pointedly, as the chemo side effects get cumulatively ickier. The possible exception is today, 'Day -6'- as she is infused with a chemo called 'Carmustine' which is particularly known to significantly lower blood pressure. Faye's blood pressure is on a 'baseline low' naturally so the nurses have been staying with Faye and taking her blood pressure every 5 minutes. So far she's dipped twice - 89/49, and 96/33, - at which point they interrupt the chemo infusion, add saline until pressure is back in range, then restart the chemo at a reduced, slower rate. We are on pause right now as she's at 92/30 and we have a team of Doctors and nurses in the room - I'm trying to stay in my corner here out of the way. Tomorrow, 'day -5', through 'day -2' Faye will have a combination of Cytarabine and Etopiside, 'Melphalan' on 'day -1' then 'day 0' is transplant day.
We are on the 7th floor in the BMT unit which is separated from the rest of the hospital, and seemingly the world, with two sets of big double wide doors covered in big red restricted access warnings/instructions. There are two categories of patients in here; 'Protective Precaution' (standard BMT) and 'Isolation'. The rules and guidelines for both are also about a mile long with phrases frequently bolded, italicized, and peppered liberally with 'must', 'must not', 'patient use only', etc... there are a few 'may', 'may not' and 'permitted to' phrases as well. Visitors are limited and must (see what I mean?) be on a pre-approved list, have up-to-date immunizations, recent flu shots, be in good health, follow BMT protocol, etc. Just as an example, the instructions on hand washing alone are a page long and involve six steps.
We have our phones and computers, schoolwork, books and videos - all of which are wiped down with bleach. In addition to the other constant interruptions the staff comes in and cleans/bleaches the room top to bottom twice a day every day. All surfaces now have a bleachy fog and my nose and eyes burn constantly from the smell. There is a strict low bacteria diet, no food allowed in the room except for Faye's, and under standard BMT precautions we can bring in outside food to Faye if it is sealed and/or low bacteria/freshmade.
The pre-approved visitors can come and go, one at a time, but it's rather a hassle so I'll limit my excursions and mostly stay put. However if Faye has other company and is feeling well enough Sunday morning I will sneak out for some tennis(!). There is a treadmill and an exercise bike here on the unit, which of course I'll be using daily, heh, hem.
So right now Faye is 'Protective Precaution' status, and as I was saying the ickiness steadily increases and then should 'bottom out' around day one or day two (about a week from now) until about day 7 (about two weeks from now) during which time she will be both 'Isolation' status (additional rules and restrictions) and heavily medicated.
So that's what it's all about for now, getting through one day at a time, and focusing on mindless entertainment like The Avengers and Season 5 of Big Bang Theory.
~L
PS Thanks to everyone for kind thoughts, prayers, wishes, texts, emails, phone calls, cards, magazines, movies, meals, care packages, tutoring, visits... wow.
