Okay, so today started pretty much the way the rest of this week has started. Sarah woke up screaming in pain at 7 am, the nurse gives her a bolus of extra pain meds. She goes back to sleep, as do I, for the five minute intervals in which the @#$%ing TPN does not cause bubbles in the line that make the machine beep off every 30 seconds. Then, after about two hours, I noticed that this morning was different. Sarah was sweating buckets, for one thing, and for another, she was drooling blood and screaming that her mouth hurt. Further inspection proved my suspicions: the mucositis had finally spread from her gut all the way up to her mouth. The nurse went to rounds, they agreed to up Sarah's pain meds again, and Sarah has been in and out of consciousness all afternoon. When she is conscious, she is either screaming in pain or just lying there, which is almost more than I can bear. Anyone who knows my baby girl knows that this is not her. Just yesterday she was laughing and playing, and while I'll admit that like most mothers of active toddlers, there are days that I count down the very minutes until bedtime just to get a moment to sit, I would so love for today to be one of those days where I don't get to eat or even pee because this little girl has kept me so busy. I hate seeing her this way.
Today, as she was sleeping in her father's arms, I had one of those strange out-of-body experiences, where you all of a sudden see your life from the outside in, where for just a moment, it seems as though you have awakened into your life, and you can't believe it is what it is. It is very unsettling, to have moments like these, at the best of times. Today, it was downright disturbing. I am 32 years old. I will be 33 in just two months. I have a daughter, named Sarah. Sarah was never on the list of names I doodled in my notebooks as a preteen. But here she is, my Sarah. She is her own little person, unbelievably bright, unbelievably gifted, unbelievable beautiful, unbelievable stubborn, unbelievably brave. And she has cancer. I never wrote that in the notebook, either.
This is my life. This is the quantifiable sum of my existence, plus or minus a lot of details, but that's the gist of it. I am a Cancer Mom. I will do what needs to be done until there is nothing to be done, good or bad.
As of right now, she has spiked a temperature, which means they had to access her port to draw blood cultures. Thank God, she is not allergic to the new numbing cream, LMX4, like she was to the old Emla numbing cream that they switched from two and a half years too late. Because of her temperamental and teeny little port, they had to poke her twice to get it to draw, but my daughter as usual was a rock star and didn't even move, hands tucked behind her head as though she were cloud watching. Then came the Parade of Pills, the process of filling five thousand tiny little gel caps full of the liquid medications she refuses to take on their own, even though it would be so much easier on everyone involved, most of all her, but my daughter, she is a stubborn one. Have I mentioned this before? Once or twice? :) No sooner did I have all four syringes' worth of liquid meds down her throat then she proceeds to gag and throws them all right back up again. Yeah. So the nurse orders more, and round two of the Parade of Pills begins...she proceeds to throw one of the important ones right back up for the second time. Sigh. Is this really my life?
Ah, but it is. And what makes it all worth it is the adorable little monkey who leans her little bald head against my arm as I am filling my umpteenth gel cap full of liquid medicine and tells me that she loves me, and that she's sorry for throwing a fit. The little monkey that is using the app I bought to teach her to write her letters as a drawing board to make digital art at 1 am without so much as a yawn, as though it were 1 pm. This is my life. This is my child. And if I had a notebook in front of me, I would write her name in it a thousand times.