July 30, 2020
The other night my mom put on the Bee Gees and sang along while she cleaned up dinner in the kitchen. My dad sat nearby in his wheelchair. He was a little low and a little sleepy, but he watched my mom, and I watched him watching her, and it was so tender I had to look away. When the song “How Can You Mend a Broken Heart” came on, she looked over at him partway through and saw him quietly crying, and then she started crying too, and then so did I, and then we all looked at each other and laughed through the tears, and then we cried some more.
As I write these lines, I can hear her softly singing hymns to him in the living room, as he drifts off to sleep in his hospital bed. He’s been requesting “Leaning on the Everlasting Arms,” so she started there and then worked her way through others. If you’re walking someone you love through terminal cancer and you want to cry EVEN MORE than you already are, just give the lyrics of “Beauty for Ashes” a quick perusal, and then listen to the Indelible Grace version of “Abide With Me.”
This has been a highly unusual/often stressful season for our boys, who sometimes drive me crazy but often make me crazy-proud. Mostly they kind of roll with the punches, but they all have their ways of processing what we’re going through. Will recently performed brain surgery on one of his stuffed animals, and has been asking us all to please be quiet when we pass by his room so he can get his rest. And the other day, while Foss was contemplating my dad’s plight, he came to me and said, “I know a little bit how he feels, because I would hate it if this was happening to me.”
In the last two weeks, my sister and brother-in-law and my niece and nephew stayed here in my parents’ house with us. My dad’s sister and my uncle spent two whirlwind days here. Friends and family aplenty have walked through our doors. My parents’ friends AND mine have brought incredible meals, both culinary and comforting. Friends have made and brought and sent bread. Another friend brought us a gift basket full of comforting things like blankets and pens (cheers to those who also find pens comforting). My uncle brought a box of photos for us, and we had fun reminiscing as we looked through those. One of my sister’s friends Venmo’d money to me so we could buy a meal. My mother-in-law made a gorgeous quilt for my dad. My sister’s mother-in-law arranged for us to have several quarts of ice cream. Employees at our company sent Jeni’s ice cream to us. Friends have dropped off gifts on our porch containing meat and cheese and fruit, or fixings for home-cooked meals. People have called and texted and emailed. They have come with flowers, with their presence, with prayers.
A friend of mine and Todd’s is the president of Phoenix Seminary, and he came over because my dad wanted to donate his collection of academic theological books to the seminary library. For those couple of hours, with the two of them talking together about seminary and professors and books and people they know in common, we saw my dad light up again, and a little of his old self came through. A few days later one of my parents’ pastors came over, and he settled in to talk and listen, with so much love for my parents. He cheerfully accepted offers of imaginary coffee from my five-year-old, and tearfully offered up prayers for our family.
The hard moments happen in between all of those wonderful ones. There are the unwelcome day-to-day difficulties that happen when cancer is wreaking its havoc. Every morning Dad wakes up and is confronted anew with his weakened physical condition, and with his decreasing ability to converse with us. There are more dramatic difficulties, like those dang seizures. (A friend of mine texted, shortly after learning about one of the lengthier ones, “These seizures are starting to piss me off,” and we’ve been quoting her ever since.) During one of the overlapping days that my sister and her family and my aunt and uncle were all here, my dad had a doozy of a seizure, and we all sat and stood around him, our hands on his shoulders and legs, reading the bible to him while the right side of his body twitched and convulsed. We read Psalm 23 and Psalm 139, John 13, the book of Philippians, 2 Corinthians 4 & 5. The kids came out and told him how much they loved him, and he told us all the same. It was dramatic and terrible and desperately precious. And then, after hearing Philippians 3, he said he wanted to hear more passages about circumcision, and we looked at each other to make sure we’d heard him correctly, that he was actually cracking jokes while in physical distress.
Later that afternoon, two hours into that terrible seizure and minutes before paramedics arrived to transport Dad to a hospice facility for the night, the nurse came over to let him know she was leaving. In a weak whisper, in the midst of seizing, my dad asked for her name. “My name is Gloria,” she answered. Looking her straight in the eyes, through his pain and discomfort, Dad said, “It’s so nice to meet you, Gloria.”
Prior to that day, Dad was already on crazy-high doses of two different anti-seizure medications, but now my mom, my sister, and I have been instructed on how to administer a subcutaneous shot in case another “breakthrough seizure” occurs. There’s a PICC line/port/needly-tubey-thingy stuck in his belly, and we have the syringes all ready and raring to go for when we need them, and my dad is FULLY CONFIDENT in our abilities to properly administer high doses of sedatives to him. (In point of fact, he mostly trusts us, although he got a little nervous the other day when he saw us practicing how to inject him and he thought for a few scared seconds that we were just going to start shooting him up, willy nilly.)
I keep saying “we” but that’s mostly been my mom and my sister Emily. They’re both like medication ninjas, keeping track of the amounts and timing for all of the ones that require a strict schedule, and effectively gauging when to give the ones marked “As Needed.” Emily made and printed a daily spreadsheet, complete with a spot for us to sign and time-stamp each medication, and every time my mom signs it she laughs that my sister included that, and laughs again that she obediently does it. Emily and her family have gone home to Wisconsin now, but those two ladies are going to deserve honorary pharmacology degrees after all of this.
One morning, while my sister’s family was still here, Will brought out to the breakfast table a copy of Mr. Wishing Went Fishing, which was a childhood favorite of my dad’s. Despite his physical and mental weariness (and to our great surprise and delight), Dad picked it up with his good hand and began to read aloud. Will leaned in, and was quickly joined by my niece and nephew, and all three of them crowded around and listened intently and giggled frequently as my dad read that whole silly book, doing voice inflections and everything. It was an amazingly dear moment, one of my favorites in the last couple of months.
I don’t dwell on the hard things in these posts, but I’m assuming everyone knows that this terminal brain cancer journey isn’t just cupcakes and singing and imaginary coffee and circumcision jokes. Staring down the barrel of a glioblastoma is an upsetting experience. It’s exhausting physically, mentally, and emotionally. It can make us snappy. It can shake our faith at times. Watching a person you love become confined to a bed or wheelchair, walking with them through physical and emotional distress, seeing their life in this world begin to fade, even as their presence remains more precious than ever…well, it’s a whole barrel of emotion.
The sadness itself isn’t the upsetting thing. Sadness is difficult but it feels pure somehow, because it’s a companion to Love. C.S. Lewis said, “To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken.” We’ve had our uglier moments, naturally, but the sadness — the vulnerable, heart-wringing sadness — doesn’t feel ugly. It feels almost holy.
Someone my parents don’t even know sent them a generous gift card for food and included the sweetest note with it. Added to her own words, she shared this (from St. Augustine): “The tears streamed down, and I let them flow freely as they would, making of them a pillow for my heart.” We don’t know the woman who sent those words to us, but we find ourselves quoting them often. It’s a gift to view tears as a comfort rather than a curse.
One of the evenings when there was a small army of us all staying in the house, my mom was changing bedding for the umpteenth time and she briefly lamented that she didn’t have the right pillow cases to go with the sheets. “Well,” she sighed, “desperate times call for mismatched pillow cases.”
Oh, these desperate days. We’re crying on mismatched pillows and praying to God, who is “our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea.” Amen and amen. Brain cancer sucks, but God is our refuge and strength.