Aug. 25, 2016, 10:59 p.m.
I haven't written in a while, and it's not because I can't think of anything to say. We took a trip to Squaw Valley, near Tahoe (which the kids called "the pond"), and I took a break from seeing patients for a couple weeks. Life was different for a few days, and it was tempting and maybe even necessary for us to pretend that leukemia had never entered our lives a year ago. The kids made sand castles on the shore and yelped with excitement when the water would wash up onto their toes. Decky threw sand into his own hair over and over, giggling with pride. Aila and Zander fought over every last thing, like brothers and sisters do. We took all three running along a bubbling Tahoe tributary and took everyone on their first gondola ride. It was so normal that it was tempting to just pretend that there had never been a reason to write a blog in the first place. So I didn't write.
We left in the early morning on a Tuesday and drove three hours toward the Bay before stopping at UCSF Benioff for Aila's scheduled infusion. Of course, a pediatric chemotherapy infusion is obviously a terrible way to end our first true vacation. But it was efficient, since we were already taking the day off from work and Benioff is on the way home. Plus we don't call the shots on what days she gets chemo, as chemo trumps everything. The visit was routine (MD appointment, nurses access Aila's port, infuse, de-access and bandaid, pick a toy from the toy box). What wasn't routine was that they put us in a chair rather than a private room. Usually, they opt for a private room for us, maybe because Aila's so little and tends to cry a lot during access and de-access, if I had to guess. But they were busy today, and I hopped into the chair first and Aila into my lap while Dad took Zander and Declan down the hall to the infusion center toyroom. When I looked up, I realized that there was a family across from us. A little girl, about as big as Aila, was sitting in her father's lap receiving her infusion and watching the iphone. Her mother, who was sitting in a chair next to her family, greeted me and asked the little girl to say hello. She was three too, with acute lymphoblastic leukemia just like Aila. She was only about two or three months into her treatment, and they asked us many questions about what lay ahead. Aila was shy, opting not to speak much but ogling with curiosity the little girl and her port.
I felt an odd mix of emotions. A part of me wanted to run over and give all three a huge hug, channeling empathy and comraderie. I felt guilty as I answered their questions about the next phases of treatment as honestly as I could, almost as though I felt bad even suggesting that their sweet daughter would undergo such agony very shortly. There was a complicated longing feeling deep within me too, one that wished that this woman would become a great friend and that we could develop both a wry humor and humble dialogue about our shared experience. After the mother gleefully said that her daughter had "done great with induction and consolidation," two excruciating parts of leukemia treatment, I also found myself annoyed and maybe even a little mad. I didn't think this was likely true, that things were hunky dory, since the parents also described living for a month at Benioff which was over three hours from their home. I then felt bad for feeling annoyed, instead feeling sad that somehow even part of this conversation, where two families were so very vulnerable, seemed like a competition for who was "doing it better" or "fighting harder." My anger was misdirected, I realize now, as they only feel the same pressure that Brian and I do, which is to minimize the mammoth impact of cancer on our lives, our souls, our being.
Saying out loud that an experience as titanic as pediatric cancer has changed us, is still changing us, as humans, as a family....it somehow seems very different from complaining, from focusing on the negative, from wallowing. Right? I suppose I second guess myself on this one all the time. For me, saying out loud what has occurred, what continues to occur, feels like telling our truth. In addition to pediatric cancer, our truth also contains messy and warm baby kisses, little boys learning to ride bikes, first words, and so many other sweet memories. But we still live and breathe Aila's leukemia. It's part of who we five are as individuals and as a family, occupying a lot of space these days. With any luck, it will occupy less in our future. But the bad (and the good) of it will always be part of our truth, of our story.
Zander started kindergarten on Monday. I admit to a startling lack of maternal emotion at this transition. He seems excited, I'm glad he's there, and I don't understand my reaction at all. Brian's seemed more appropriate to the circumstance, appreciating and reflecting nostalgically on the speed with which he is growing. It may be that I'm attracted to how "normal" transitioning to kindergarten seems, and I'm just grateful that my little boy gets to do something typical and ordinary, without any cancer fanfare.
Onward, onward.
Comments
Chris Cosgrove 8 years, 3 months ago
A great blog. Thanks so much, Vic. The words make us feel like we're a little closer than 3000 miles away.
Link | Replyvk 8 years, 2 months ago
"Saying out loud that an experience as titanic as pediatric cancer has changed us, is still changing us, as humans, as a family....it somehow seems very different from complaining, from focusing on the negative, from wallowing. Right?" Right.
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