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. ♥
Sunday, September 06, 2020
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.
Wednesday, April 29, 2020
Tuesday, November 05, 2019
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|
|Lobby of the Aria Hotel where we stayed|
|Nearly-naked Goat Man|
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!
|Mt. St. Helens & Mt. Adams|
Wednesday, June 12, 2019
Thursday, May 02, 2019
With a heavy heart, I am writing in remembrance of our dear Uncle Ernie Spadafore who left this realm yesterday, May 1st at the age of 92.
|Ernie & his late wife June|
|Uncle Ernie with my mom on her 3rd or 4th birthday|
He was a great-granduncle to our kids and one of the namesakes for Calvin's middle name (the other being Ken's late father). Having no children or grandchildren of his own, we were tickled that we could honor him when we named our boy, Calvin Ernest. It meant a lot to me too that Cal has his own memories of one of the wonderful men he is (middle) named for.
|Calvin's 1st Birthday, 2013|
Photo by Grandma Cindy
Ernie was a younger brother of my Italian grandmother, Irene, and he was a dependable companion/caregiver to many people throughout his life, especially to his mother, Agnes; his wife, June (who suffered an aneurysm and convalesced in a facility until her death decades later) and to other friends who needed help in their elder years.
|Ernie with members of our family. Sitting next to his sister, my great aunt Rose. |
Top row: my mom, and great aunts from the other side of the family, Bev & Mary. Date: Early 2000's
|Celebrating his 89th birthday at Mom & Cindy's place with the Italian side of the family, 2016|
He was a World War II veteran, decorated with the Purple Heart for injuries sustained during fighting at the Battle of the Bulge in Germany. He was an accountant by profession but loved to play poker & black jack down in Reno and Vegas--he also seemed to do well at it.
In fact, he loved going to the casino so much, that less than a week ago, the hospice team made special arrangements to get him to the Ilani Casino in Ridgefield. They had to sort out oxygen tanks, drip morphine and transport him via Uber but he got to enjoy his favorite activity one last time.
It was easy to see he adored the children and loved their energy because he lit up around them--you can see it in all the photos.
|Christmas Eve 2017|
|Elmer's Breakfast with Cousin Marge & Uncle Ernie,|
|Sidney, Annabelle & Calvin with Uncle at Thanksgiving, 2018|
The kids even got to see him recently a few weeks ago when they were staying down in Portland with my Mom & Cindy. I am so glad for that!
|Last visit with Uncle, April 2019|
Friday, April 19, 2019
Over the 15 years I've known her, I would speak frankly to her like how I would to one of my fellow mom friends. Despite our almost 50 year age difference, she loved talking about everything from the kids' milestones to world events. We exchanged similar opinions and thoughts on politics which, like me, she closely followed. But she loved MSNBC's Ari Melber, even saying to me once, "Did you see my boyfriend on TV last night?" in a slight Southern accent. It made me giggle and when I would offer up some other interesting tidbit of news, she'd say with a lilt in her voice, "For real?"
She loved Pacific Northwest Smoked Salmon so I would send her a box every few months. I also began to include Fran's Chocolates and photos of the children. She really loved seeing the kids and when Sidney was a baby she insisted on buying her an outfit for a wedding we'd be attending later in our visit down the Shore. She was always so generous and thoughtful, often baking her infamous and delicious pound cake for us to take.
In the last few years, her eyesight deteriorated to the point that her home was outfitted with supports for a person who is blind. At that point, I would try to find things to send that would delight her other senses: lavender hand lotion, a fuzzy lap blanket, spiced tea. But she would also request the Italian Pizzelle cookies that we make around Christmastime. She told me how she'd put the tin away when there were guests, as to savor them because they were her favorite.
Our last visit with her was in June of 2018 where we walked slowly down to the park to watch the children play and burn off some energy before we made the usual three hour drive down the Eastern Shore to Ken's folks' house. Her steps were slower and she used a walker but she was still out there with us and enjoying the city that she spent so much of her life in.
The last time I spoke to her this past March as she was settling into another assisted care facility and we spoke of an upcoming visit in July that we planned to make to the East Coast that would naturally include visiting with her too. She was excited to see us again. But after a serious fall later in the month, she just couldn't recover. Her daughters have been kind enough to keep us informed and updated on her situation and status.
She was very dear to us and a unique, loving soul in the world that we are ever so grateful to have known. RIP Mary.