Funny Guy

My dad’s disease has progressed to the point where treatment isn’t an option and he’s now in hospice care at home. It’s been a super sad and reflective time, but also surprisingly light and full of gratitude. I’m so impressed that this amazing man continues to show us his wit, his strength, and his love.

Yesterday as mom and I were trying to adjust him in his bed- which involves us lifting 180 lbs with a bedsheet- I look over at him and he’s got his hands in a prayer, like, “here we go…dear god, don’t let them drop me.” There was a slight twinkle in his eye.

And on Saturday as mom was trying to give him his medication, he was actively pursing his lips. I lovingly called him a “stubborn piece of shit” and he grinned.

And then when I was helping him change his shirt, I bumped his elbow on the bed rail and he rolled his eyes at me and smiled as if to say, “novice!”

I love that even without many comprehensible words his personality and wit are as fresh and quick as ever.

He knows what’s going on and he is sad at times, but he continues to thank us and express his love. Yesterday he was tapping his chest and I asked him what was going on, and he said “I’m celebrating.” And then the times I’m holding his hand- he does a little bunny nose twitch. I’ve realized that his nose itches but rather than separate from my hand to rub it, he just tries the wiggle.

My favorite thing, though, is how much he still appreciates his food. He’s not eating much but every time we give him something- whether chocolate ice cream or a lemonade- he rolls his eyes and says “wow!” Or “my god!” As if it’s the BEST THING HE’S EVER EATEN. His love, gratitude, and humor put everything in life in perspective.

Humor in the New Normal

Dad is recovering from his third brain surgery in 18 months. it’s crazy to think how different things are now than a year and a half ago. Brain surgery then seemed like a big deal. Now it’s beginning to feel... rote.

I remember where I was when I heard; walking east on Taraval St. towards our house, the day after Thanksgiving 2017- a carefree family hike to the ocean and back. That was the day I learned he had cancer.

Fast forward to the present and he has already beat the average life expectancy for glioblastoma (average is 13 months after diagnosis). I think we were all starting to believe and behave as if he might be the exception to the rule. But then he started losing words and comprehension, and they found (and removed) another tumor in January and now again in May.

It’s hard to see this formidable man— this social, extroverted guy with the expansive vocabulary and the drive to succeed— struggle with communication. It even feels like a betrayal to write these words.

Friday’s surgery was as much of a success as it could be. He seems clearer, can speak in longer sentences, more “himself.” And his humor is back, a little. When my mom gave him his [small] cup of hospital ice cream, he started making jokes about it being perfect for a very tiny character and Hobbit references ensued.

As his family, we have also had to find humor in his condition. Which again, feels like a betrayal at first... until you realize that in the new normal, one still needs levity to balance the pain.

When he first woke from surgery, we asked him if he needed anything. He said, groggily but in all seriousness, “I know it’s not possible, but I’d love a nice bourbon or a glass of Pinot.” (Um, Dad- we we’re thinking more along the lines of a cup of water or a blanket....)

And then it was the fixation with his sinuses. Every time his neurosurgeon or nurse asked him how he was feeling, and he’d motion to his eyes and nose saying, “I’ve got some congestion here.” And we’d giggle, as he basically referenced the pain equivalent of a paper cut instead of his BRAIN SURGERY.

I guess that’s why they say laughter is the best medicine.

Two days post-op, with his grandson. 

The Night Nurse

It’s 6:45 am and Dad’s sleeping soundly, after having been up with some pain in the middle of the night. He’s recovering well, considering, you know, the brain surgery and all. It’s day three post-op; removal of a second Glioblastoma tumor. We await MRI and test results today to learn more.

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Yesterday morning was good- Dad seemed himself for the first time in a while. He was telling us about his night nurse and how “strict” she was as we filed into his ICU room; embellishing and entertaining us with a German accent and Quite Serious Nurse impersonation (“you vill pee now!” and “I vill give you shots ven I come back!”). The more we laughed the more Dad joked- such a gift. (Turns out the nurse was not only not German, but also just efficient and professional. Having grown up with a German grandmother and mother, Dad’s humor is especially dear).

But it made me realize again what makes Dad so... Dad. He’s focused first on the person- he wants to connect with you. He wants you to want to connect with him. He wants you to be happy, content, safe. He’s not listening to your words until he makes sure you are all of those things. If he can’t get a read on how you feel, well, then, apparently you become a strict [and German] night nurse.

Every time I leave the ICU he asks where my coat is- reminding me it’s freezing outside (yes, thanks Dad- we’re pretty aware of the 17 inches of snow, sub-zero temps, and state of emergency in buffalo).

When my sister grimaced and shifted positions in her chair (having hurt her back a few days ago), Dad stopped the entire conversation to make sure she was ok.

And after dinner last night, he asked us what we were going to have... for dinner. He’s not remembering our answers but is persistent in making sure we are comfortable and well-fed, from his hospital bed.

I remember being 17-ish and heading out for the night- the questions from mom were of the who/what/where variety and from Dad it was, “Do you have a coat? It’s pneumonia weather out there” and “Have you eaten? Have some bread, it will soak up all the alcohol.” (And also, “Do you have enough money? Here, take this just in case” as he slipped me a $20). Concern for your wellness, matched with just the right amounts of worry and love. 

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The sun has come up as I finish writing. Dad’s still sleeping. Hoping today is even better for him. And I’m eager to hear the stories of the Night Nurse when he wakes.

The view from 8th floor ICU Waiting Room at Roswell Park Cancer Institute. 

Togetherness: In the Waiting Room

Coffee cups, glasses cases. Crumpled napkins and half-drunk water bottles. Comfy socks and books and... us. Here, together.

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I was just in Buffalo last week. Here to be with mom and dad and for the kids to get special time with them. When we landed home in SF, Oliver bawled. He loves his grandparents so fiercely. He loves them with the force of a million loves. He loves them so much that he secretly wrote this note the next morning en route to school:

“Grandma and Grandpa, I really miss playing all those games with you, and the nerf, and the cheese, and the movies, and the gym, and Sear, and Niagara On The Lake, and the brownies, and the snow, the banana bread, and going to buy stuff, and the snoball fight, and the thing for the sled, but most of all I miss...”

“... YOU. I love you GUYS A LOT! I love you, love Oli [sad face]” 

When we landed in SF I got the text from mom, “please call me when you can.” And I knew; the MRI results were bad. Dad had been more confused, losing words and conversation threads. They found another tumor and significant brain swelling. Surgery would be scheduled asap.

And so I’m back. Buffalo didn’t get any warmer in the last 5 days. But it’s warm here, in this space, with these people. My people. My brother in law said it well- my family knows how to rally. I couldn’t imagine it any other way; there’s no world in which I’m not here. So we’re here in togetherness, waiting.

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Watching her face is hard.  She nods, expression intent, neutral. We hang on every word, every mouth or eye movement, for a clue. “Ok,” she nods, “thank you.” She hangs up; all is well and they are nearing the end of his surgery. Mom is strong and fragile at the same time.

Meanwhile the emails keep coming in. Prayers and thoughts. Offers of support. The kindness of friends and family is overwhelming in the best way. 

And so we wait. In the Waiting Room. We drink our coffee, we remove our glasses to wipe a tear. We eat and share silly cat videos. We discuss topics like fear and belief. And we read; solitude in togetherness.

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Update: Dad’s surgery went well. He’s in recovery for the next few days. More waiting, but it’s grateful waiting.