Day 1: Sleeping Beauty

That’s right. Our intrepid little adventurer has acquired a nickname in E Unit’s halls: Sleeping Beauty. And so right they are. On both accounts. If I had to guess, out of the 24-hour day, Erica slept for probably 22 of them. Every few hours, she wakes up quite groggily, never fully coherent or communicative, takes care of business, then falls ever-so-easily back into a medication-induced sleep that may or may not take her to dreamy places. Room E131 echoes with two sounds: the twirling pumps of her IV lines (3 to 5 at any given time) and the sound of her heavy breathing. An example below (she will kill me for posting this) of our Sleeping Beauty:

For someone who is sleeping for 22 hours a day, it’s hard to describe how being with them can be an intense experience. Katie, Judy and I rotated in pairs today being with her. Over 90% of the time, this means reading, working, listening to the IV pumps whirl, getting info from the nurses/doctors, staring at Erica, trying to ventilate your gown or juggling your laptop while trying to silence the beeping pumps, because they have air in the line, are out of fluids, the battery is dying or they are just acting ornery, while waiting for someone to come fix the problem (this is at least 40% of the time).

The other 10% is much more humbling. Usually, when Erica wakes up, it’s suddenly, whether by her own body or by a nurse or doctor needing to take vitals, give her medication, etc. It takes her less than 30 seconds to realize that she needs to either go the bathroom and/or vomit. Up to another 30 seconds to communicate those necessities, which is usually either five seconds in time or five seconds too late. Today, she vomited every time she woke up. It’s rough to see someone you care for who is half-coherent doing nothing but going to the bathroom or vomiting during their only waking moments. And she goes through the motions every time, never ceasing to amaze me in how courageous she has been throughout this entire process.

Even though she is vomiting and had a headache today, these are not bad signs. Quite normal with the chemo and radiation that she received. She is holding tight with her vitals, maintaining a good blood pressure and a perfect temperature, which are important. Because she is asleep so much and can’t hold food down, she is being fed intravenously. She has two bags, one is full of lipids, or the “fat” bag, and the other is full of the necessary vitamins she needs. Today being Day 1, she also received methotrexate, another type of chemotherapy that is designed, in simple terms, to keep her new donor’s stem cells from being too aggressive at the outset. She will receive this on Days 1, 3, 6 and 11 and why her new white blood cell counts will not start appearing until in between Days 14 and 21.

The best part of today, by far, was when I was chatting via webcam with Jaci and she was teaching me some basic sign language that Erica knew to communicate that way rather than through speech, which is sometimes difficult for Erica (because of her groggy state). When Jaci would say what she was signing to me, Erica would sign it in her semi-conscious state, hearing her sister from across the room. Very sweet. Even though she is comatose most of the time, you can still see her spirit coming through the haze.

Despite Day 1 being quite rough on Erica 10% of the time, she made it through without any issues as a result of the transplant, which we must all be thankful for. We can only hope that the other 90%, Erica was in a much better place (eating croissants and drinking a café crème in a café in Paris, for example ;) ).