Remembering Ken 1968-2021

The world lost a beautiful, creative soul yesterday. Our lives will never be the same but they are infinitely better for having known and loved Ken. He fought brain cancer valiantly for 21 months and taught us to cherish the time we have together and to find joy in the moment. We will love you always and hold you forever in our hearts. ♥

Tribute to Ken

Surgery Anniversary

Today marks exactly a year since Ken's brain tumor surgery. It's one of those moments that cleaves our life distinctly: Before. After. 

9/6/2019

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.

8/22/2020

9/2/2020

Birthdays in the Pandemic

On my birthday this year, Seattle Public Schools announced it would close for at least 2 weeks which eventually became the entire rest of the school year because of the pandemic. So---not the best gift I've ever received. (party horn)

But many other birthdays would come to be celebrated in the midst of the pandemic quarantine where everyone was housebound and nothing was as it once was....

An idea sprung to life when Ken found a stop-motion app, installed it on his phone and started making short videos with creative direction from the kids. With our humble team of four, we started to see what we could accomplish and I eventually purchased an inexpensive green screen drape, piping and stand up lights. What could we make? How about something short, fun and celebratory.... 

Creating birthday videos has been an educational and inspiring endeavor. It can be intense when everyone has an idea of what they want or is not completely on board with what is going on. Ken is a great idea guy, visualizing what might be novel or fun. I am the pragmatic producer-type who tries to figure out how to accomplish what Ken is proposing. But if it does go off the rails, Ken ends up being the guy who has to clean it up in post so I do try to keep things in the realm of attainable and give proper advice about lighting and camera angles upfront. 

To this point, everything except Annabelle's video was shot with cell phone cameras. But I am eager to fire up my GoPro next time. I still remember some of my WSU video production training and hear the echo of my friend Ian in my head when setting lights. 

The kids are charming, no cost actors and creative consultants who I hope enjoy this process as much as their parents. It's quite fun to make something new and creative that hopefully brings a smile to people's faces. Even if it's cheesy as heck. 

For Fancy (stop-motion + green screen)

For Max (stop-motion LEGO)

For Annabelle (basic editing with Premiere Pro)

 

 

For Sarah (green screen and significant Premiere Pro wrangling)

For Kristin (um...magic)

For Austin (Dancing!)

Gaga Las Vegas

I first saw Lady Gaga (with Sarah) back in January of 2013 when she was touring the Born This Way Ball to support the album of the same name. But soon after her stop in the PNW, she cancelled the remainder of her tour because of an injury that required surgery. Even then, when I assume she was in great pain due to her-not-yet-announced fibromyalgia diagnosis and experiencing extreme angst about her condition, yet she delivered a high-energy, athletic show.

Flash forward six years. In February, I'd heard that Lady Gaga was going to add more 2019 shows to her Las Vegas Residency later in the year. I hadn't been to Vegas since well before my babies were born--over 10 years. So I thought, why not? Ken said he was up for it and we kept it easy. I think he especially enjoyed the low 70's highs.

Views that will do

Why we're here

Lavender chandeliers

But soon after we landed I realized things had changed. The difference between doing Vegas at 45 now is that I personally wear way too much clothing to fit in and the contact high from all the legal cannabis enjoyed by fellow revelers makes drinking almost unnecessary. A perfect Vegas vacation now includes taking a long hot bath alone in a jetted tub while also being able to watch cable television uninterrupted. So that's something. We also ate fancy food that the kids would hate and took Lyfts everywhere. One driver even smashed my fingers as he closed the window without realizing I was holding on to the door frame. Luckily Ken had a cup of ice water that I commandeered. No tip for that driver.

Lobby of the Aria Hotel where we stayed

Downtown (Old Town) Las Vegas does not disappoint!

Come for the $5 craps tables, stay for the street chaos and 

nearly-naked goatman. #vivalasvegas

Nearly-naked Goat Man

Saturday morning we ventured out to the Neon Museum where signs from bygone Las Vegas continue to live in infamy. Currently they are featuring art installations, "Lost Vegas" by 

Tim Burton, interspersed among the permanent collection also. 

(We're told it's amazing at night!) 

Finally, drinks, bites and silly photos at the 

Waldorf Astoria SkyBar before the show.

The Main Event: ENIGMA by Lady Gaga

While she might not be everyone's taste, LG is incredibly talented and driven. She performed with a sinus infection and fever, she later informed us, and yet you could not tell. Her shows are high-energy and the singing is very muscular so she has to give 100% to pull it all off and she did. But I hope she got to go home and drink tea and rest. I love that she played some of my favorite dance songs from her early work and some less popular tracks like 'Aura' and 'Government Hooker'. She also presents interesting staging like being suspended from the rafters on wires high above the audience while descending down to the stage playing a keyboard guitar for 'Let's Dance.' It's all a spectacle to behold and she promotes self-love & acceptance above all. 
Let that freak flag fly!

Here's a snip from her encore of "Shallow"

But alas after losing net $60 at the craps tables and continually drifting through cigarette smoke-smelling casinos and restaurants, with no amount of lotion or water to make you feel properly moisturized, it was time to go home. Thanks Gaga & Vegas--see you in another 10 years.

A gorgeous view on our flight home: dormant & formerly active volcanos, just waiting for their moment

Mt. St. Helens & Mt. Adams

Mt. Rainier

Many thanks to Dad and Ann for watching the kids for the weekend and keeping them so busy! 💗