Greetings friend! This is Bill’s daughter, Jessica.
What a year! 2020 was a year of so many ups and and a whole lot of downs. This story is about the downest down.
I got hired at Cirque du Soleil in February 2020 and then only 30 days later, due to Covid I lost my fancy new job. A few months later, I got a gig nannying in Alaska for a few months… but two days before flying home, I came down with a fever: I had managed to get Covid myself. After dealing with high-energy, asymptomatic children for two additional weeks, I flew back to Seattle. I was exhausted, but ready to start a new job for the holiday season at Nordstrom. My father picked me up at the the airport, and I spent just one night in Redmond before beginning my drive back to Las Vegas to start working again.
Imagine my surprise when he called me five days later to tell me he was sick. He had a terrible headache and crushing fatigue. “Go get tested for Covid,” I said. Although, I was several days past my recommended quarantine when I saw him, it seemed like the logical thing to do. Maybe he got it from an asymptomatic friend? Maybe the CDC should extend the recommended quarantine? The test came back negative.
Several days later, the fatigue hadn’t improved. Since a member of my Alaska Covid crew had initially received a false negative on a rapid test, I suggested he get tested again.
My phone rang at 1:00 am on Tuesday, November 24. As life-long night owls, it’s not unusual for me and Pops to chat late at night. His voice was different this time though: “I don’t know what’s wrong with me. I’m taking myself to the hospital. I just want someone to know where I am.”
After assuring him that things would be alright and getting the name of the hospital, I hung up and got ready for bed.
I had work the next afternoon. By the time my lunch break rolled around, I had several missed calls from my family, including dad. I got a table in the corner at the Nordstrom Café, ordered some lunch and started returning phone calls.
Pops did not, in fact, have Covid at all: what he had was a brain tumor.
If you’ve ever seen a girl find out her dad has a brain tumor in a café on her lunch break, you know what a very sad human looks like. It also turns out if you cry hard enough at the Nordstrom Café, they will actually comp your meal.
They scheduled brain surgery at Fred Hutch for the day before his birthday, the day after Thanksgiving. They removed what they could of the golf ball-sized mass. With brain tumors, they never intend to get every last cell as they can’t risk damaging brain tissue.
A few days later, again sitting in the Nordstrom Café, I got another call: the biopsy came back. GBM. Glioblastoma. Aggressive cancer. Average survival of 1-2 years.
Only slightly concerned about my reputation as an emotionally volatile person among my coworkers, I lost it again.
They told us he would be sent to a rehab facility for a few weeks to recover from surgery… make sure he can walk and stuff before sending him “home” to start chemo and radiation. Not knowing what kind of state he would be in, they told us he shouldn’t be living alone, so we weren’t entirely sure where home would be for him at this point.
Though somewhat out of it and on lots of pain meds, Pops, unfortunately for us, passed all the tests at the rehab place with flying colors on the first day and they dismissed him to recover at home within 24 hours. We were frantic.
Pops stayed with a family friend for the first week while Brad cleared out his spare bedroom. Ryan became a full-time caregiver.
I managed to pull myself together and finish my work contract. I got laid off the first week of January, and I’m now back in Washington and just beginning to process everything that has happened.
Pops is currently undergoing aggressive daily chemo and radiation for six weeks. We won’t know how well it is working until the brain scan the first week of March. Chemo and radiation (and treatments in general) are less effective on the brain because of this usually-helpful thing called the Blood Brain Barrier (BBB). We are praying he will be one of the patients where treatments are able to penetrate the BBB.
His last day of radiation / chemo is February 8th and then he will have a month of R&R.
As of Today…
Considering the grim diagnosis, Pops is feeling pretty dang good! He goes on long walks everyday and asks for seconds at dinner.
It is unfortunate that the hair is getting really thin on the left side of his head where they “zap” him (his words, not mine). Besides the damage done to his signature afro, he says he would hardly know anything was wrong if the MDs hadn’t told him.
He is insanely optimistic and has already taken to saying he HAD cancer. In the past. “Maybe it’s already gone,” he reasons.
His sense of humor is still fully in tact and he’s able to laugh at his own brain (himself, I guess) when it doesn’t do quite what it’s supposed to do.
What You Can Do
• Send a video recording of your best wishes / positive healing vibes! Pops appreciates the cards he has received, but currently his ability to read is a bit impaired. Audio / visual greetings are ideal at this time. If you have his phone number, you can send it direct. I’m not sure how much he’s checking his email / FB messages / the other 237 ways we all keep in touch with each other these days. If you send them to me, I’ll make sure he sees them. I may even put them all together and make one big ol’ positive vibe video! (email@example.com)
• If you have treatment ideas, think we should reach out to someone, or know of a cutting edge new treatment, please email ME (see email above). Again, Pops is slowly healing from the surgery and is regaining his ability to read, but for now, it’s a struggle. Someone sent him a great ebook, but at 375 pages, he’s not going to be the one who reads it. I’m collecting / combing through info for the family so we can make decisions about his longer-term care. We are looking at everything. Standard stuff, alternative treatments, clinical trials, immunotherapy abroad, EVERYTHING.
• We will be setting up a food train. If you’re reading this, you probably know Pops has never been very adept in the kitchen, and well, it’s worse now. I’m going to try to get this organized somehow so we have a plan of attack for his rest month. 😀 We do ask that it be ridiculously healthy (I’m reading that sugar is the WORST) so no trays of cinnamon rolls please (I’ll have to eat them myself).
With Pops’s great attitude and otherwise good health, we have hope that he can keep fighting the good fight and we can keep him around for many wild post-Covid dance parties.
I will be updating the blog portion of this Web site (Bill’s Brain) with weekly-ish updates of what’s going on / how he’s feeling / what we’re up to next.