Aila
Mid-December to mid-January was a long month. Aila was discharged from the hospital a few days before Christmas. And while we were grateful, I think her immune system would have preferred a few more inpatient days. We restarted her nightly chemo, but within a few days she was looking newly peaked and pale. On New Year's Eve around 7pm, she suddenly had a 102 degree fever, and Brian and she were ER-bound once again. Her counts weren't low enough to warrant admission (thank god), and they sent her home to ring in 2017. But two days later, I took her for her regularly scheduled spinal tap and infusion. And when they drew her labs (as they always do), she was again neutropenic. No fever, so they sent us home after her methotrexate and vincristine, with instructions to hold her 6-mercaptopurine one more time. That was Tuesday, January 3rd, and she went to sleep that night "in Mama's bed," resuming her sick baby spot between Brian and me, so we could watch and check and worry. Between Tuesday and Saturday that week, she was awake (without exaggeration) for about eight hours total. She would wake up asking for food or water, then immediately go back to sleep after a few bites. It was impossible not to ruminate about the possibility of relapse, as the exhaustion and pallor were the hallmark symptoms at leukemia's onset so long ago. Our work and our school and our lives were once again abruptly shifted to accommodate illness, and it was hard not to be demoralized at this unfortunate beginning to our new year.
I'll be the first to admit that we'd perhaps gotten a bit jaded during Aila's Maintenance treatment. After the scourge of the first nine or ten months (dubbed "frontline" treatment in ALL lingo), we had settled into the routine of daily oral 6-mercaptopurine, weekend sulfa, weekly oral methotrexate, monthly bursts of dexamethasone, and intermittent infusions and spinal taps for vincristine and methotrexate, respectively. Her counts had been mainly "good" during recent months, which of course in chemotherapy land means just above the threshold for allowing (for example) a cozy home for the bacteria from the washing machine to live in your blood (which is what happened for Aila right before she was diagnosed). Anyway....we thought to ourselves, "hey, we've got this under control," "this sucks, but we can muddle through this for the next year or so until the end, especially now that we know how this goes."
Life has been very busy since the last time I posted. In late October, I made a trip East to attend two conferences as well as visit with my grandmother Muriel, Aila's great-grandmother and namesake. I had been excited about this visit for some time, hoping to surprise her by showing up at her new nursing home on the last Sunday in November with pictures of the kids, a lemon meringue pie (her favorite), and my love. But several weeks before my visit, she developed pneumonia and entered hospice. At first, it seemed like her 105-year-old body might launch a comeback. Of course, this is what everyone thought would happen, since at some point--probably around when she turned 100--we all got used to the idea that she was going to live forever and kind of stopped thinking about whether or not she might die. That was the beauty of my grandmother, that she was so comfortably leisurely in her humanness for so much of her life, that it truly seemed possible and even likely that she could go on forever.
Somehow more than a month has passed since my last post. It's easy to blame my writing absence on three kids, two careers, and a ton of laundry. But I actually think that the tiny bit of physical reprieve we feel as a result of Aila's Maintenance chemotherapy (which began in the Spring) has created just enough emotional space that some of the piled-up grief and exhaustion have taken center stage. Finally, I feel tired and sad. In a way, it's a relief, because there was not room for these emotions during the last year. Absolutely no room, as we plodded forward and onward.
Disclaimer for this blog's title: I've become a hugely superstitious woman when I speak. I remember where I was standing in the kitchen, the month after my mother had died and the dog had just been diagnosed with cancer, when I proclaimed rather flippantly to Brian, "I mean WHAT else could possibly happen?" Ha ha. Aila's gone to preschool four separate mornings! Bravo, my sweet angel! We had to pull her out after 1.5 hours this past Tuesday for back-to-back doctors' appointments and an infusion up at UCSF. And on Thursday, she was four doses of steroid in when she went to school, and Ms. Edna only said that she was a bit "standoffish." But by any measure, this is success.