Today marks exactly a year since Ken's brain tumor surgery. It's one of those moments that cleaves our life distinctly: Before. After.
Weeks later, we began to work the chemo & radiation 'program,' it was like we were living a life adjacent. The rest of the world kept going but we were on another path that moved differently, like those conveyors you stand on in long airport hallways. People bustled by us unburdened and able to plan months or years ahead, while we thought in only 6-week spans between MRI appointments.
Even though you know logically there are no guarantees for how long you and your loved ones will walk the Earth, the great delusion is that there will be enough time for everything as soon as you get "this" or "that" done. Caring for someone with a brain cancer diagnosis has taught me how my assumptions about what I thought would always exist and how time would progress were ridiculous.
Most of our community of family and friends, rose up to meet us in a way I could never have dreamed. People really show you who they are in times like this and to feel held & supported so that we could feel all our feelings, be vulnerable, rely on ready-made-meals, childcare, transport--it was a welcome relief. The people who show up and the gestures of kindness are so appreciated, even though it’s a weird time and I know it’s hard to always know what to say.
But through the winter we stayed on our conveyor, still separate from the rest of the world. Needles of dread, anxiety, isolation and helplessness randomly pierced our fragile stability. I would then scramble to patch it and reset our life again. In February, the confluence of a panic-induced clinical trial search and a meticulously-planned Disneyland trip nearly broke me. We thought we’d find a wondrous solution in a clinical trial but we actually came to see these were all science experiments, which indeed moved the study of cancer forward, but weren’t really viable treatments to count on. It was tough to accept. However, the trip--laden with what-if-this-is-our-last-trip poignance--turned out more AMAZING than I imagined and gave us a big win.
Then something really weird happened: a global pandemic struck. Suddenly all those feelings that I had felt since September, weren't just mine alone anymore. In a way, we all were/are on the conveyor belt together with this new scary disease. Homeschooling worked out okay and Ken helped teach the math parts which I was ever grateful for. Gliding into summer, we had hoped for some relaxation but it was not to be. In July, a new chemotherapy treatment unexpectedly sparked a severe pancreatic reaction and sent Ken to the ER/hospital for 10 days over a course of two weeks. It transported me back to the bleary days after his surgery, struggling to grasp new medical information. But at 7 weeks on now, things are stable--even, dare I say, positive as we got a slice of good news this last week.
So here’s two things I have come to realize on this significant anniversary:
1. People walk amongst us with experiences and conditions we have no idea about. To be aware and sympathetic to this is to honor people showing up in what ways they can. I never had any realistic conception of what a cancer diagnosis meant, even though I knew friends, neighbors and relatives who had been diagnosed with cancer. Being in it every day with Ken though, seeing how it impacts your loved one and family, keeping track of so many meds/appointments/procedures, learning everything about the disease but still not knowing enough, feeling like you’re looking over your shoulder waiting for the other shoe to drop at any second is completely humbling and it changed the lens that I look at life through.
2. So that leads me to the second thing, what we do with the time we have defines us. Despite his very serious condition and the pass people would grant him to pull into his shell to focus only on himself for the rest of his days, Ken has not done that. Within a month of his surgery, he ran a 5K and raised money benefiting pediatric brain tumor research for Seattle Children’s (which he’s doing again this month too!), earlier this year he volunteered with Doctors Without Borders to redesign their clinic signage about COVID-19 precautions and worked with translators to make those signs into several different languages and working part-time now at Google he is focused on a project with Morehouse College in Atlanta to help design a data platform to measure the disproportionate impact of COVID-19 on communities of color. I also see him doing the work to be a helpful ally to LGBT+ folks by advocating at work for inclusivity and software designs that consider gender spectrum and non-binary individuals. I see him open himself up to learn how to deconstruct deeply embedded racism in our systems, habits and perspectives and to use his position to push for changes. He is spending his time making the world better than when he found it and I couldn’t be more proud.
But one thing we talk about A LOT is our concern for this country and its future. The civic awareness and participation erupting over the last 4 years in Seattle and around the country is inspiring and we hope people never forget that we all have a role to play in influencing and making our communities safer, inclusive and more just. Voting in this year’s election for sane, scientific and compassionate leadership at the federal/state/local level is key to get us on that path.